Saturday, January 30, 2010

Downward Trend is a Good Thing

When things are not going well, and I'm not talking the typical kid stuff like stealing a brother's toy or whining about which show they can watch, it's really hard to keep perspective and to fight feeling hopeless which seems to be a frequent emotion among parents who are raising a child with special needs. The effort involved in trying to steer an autistic child's behavior toward a goal such as being potty trained, learning social cues, controlling anger and aggression is so exhausting and requires constant focus. When this tireless focus is not enough or even makes a situation worse it's hard not to drown in feelings of utter hopelessness and despair. I hate that feeling, and I do everything I can to stomp on it when I feel it growing in my heart. The feelings are understandable but they don't help him. He needs me to be strong and to be stubborn and to retain my focus whether he realizes it or not.

I think I'm typically a happy person. I probably annoy people with my cheer. Don't be fooled. A very happy person can reach very low depths and I've been there more often than I care to admit. Since I'm a stubborn, stubborn lady though, I decided I needed a plan in order to help me have a healthy perspective during the difficult times. I have been building a repertoire of tools that I develop during the "good" times so that they're available to me during the bad (since when it's bad I have a difficult time not thinking everything is awful).

One thing that has been particularly helpful for me is ranking my son's behavior every day. I created a simple spreadsheet in Excel and, for each day, I rank his behavior from 1 to 5 - 5 being the worst. In order to be consistent, I have criteria on what each rank means so that I can truly compare one day to the next. For instance, if my son is aggressive (i.e., hits, bites, etc) then his rank is at least a 4.

In order not to focus on the negative, I also input information on what successes he has each day. For instance, the last few days he has tried new foods which for those less familiar with autism is a common issue for them since they tend to have sensitivities to different foods and often prefer to stick to the same foods. It was so nice to write this into my spreadsheet to see that, yes, he is making progress in certain areas.

I also track what things may have triggered undesirable behavior such as did he sleep well? Is he feeling well? There are certain triggers that inevitably lead to problem behavior. Tracking these triggers often leads me to find possible interventions to help reduce the affect or frequency of that trigger.

Finally, I note each day if there were certain things we did that helped him. For instance, if he had a melt down, was there something we did that worked to help him calm down? Did we use distraction? Restrain him safely? Talk him down from it? By collecting this information, we can learn what works and what doesn't so that we are more effective. Oftentimes, it's hard to think what to do in the heat of the moment and focusing on these helpful tools daily makes it easier to remember things that might work when responding to a crisis.

We started this tracking system at the beginning of the year. We put his rank information into a chart, at first glimpse, it seemed to fluctuate all over the place but then we inserted a trend line and, happily, we could see a downward trend (remember that a rank of 1 means his behavior was very good). I can only hope that we continue to see this downward trend as we learn how best to work with our darling, little guy. I'm proud of him and I'm proud of us and I refuse, simply refuse to let despair prevent us from helping him be the best that he can be since we already know he's totally awesome.

Friday, January 29, 2010

No Shame in My Game

A common debate among parents of autistic children is whether to make the diagnosis public. Not only that but, if they decide to tell some people, how many should they inform? Do they just tell close family and friends, the school district, their pediatricians, or do they risk telling complete strangers who witness a meltdown or telling the neighbor next door? Each parent has to make that decision for their child at least until the child is old enough to make that decision for him or herself. It's not an easy decision for any parent.

When starting this blog, I intentionally did not name my child, although his name may slip out somehow or other. This blog is about him but I won't identify him so publicly for his own sake. I worry that I might say too much to too many people and that it could impact him adversely. I truly never want to do that to him.

What keeps me from being silent, however, is that I don't think silence benefits him or other children who are autistic. When you hide something from others, there is the implication (whether intentional or not) that what you're hiding is shameful. I am not ashamed of my son nor do I want him ever to be ashamed of himself. There is the possibility that some may view my child in a way that will sadden and infuriate me or, as he gets older, may hurt his feelings. Isn't that true about everyone to some extent though? We all are judged by others to some degree, aren't we?

Another reason my husband and I decided to be public about his diagnosis is that, before, when he was "showing his Aspergers" (without our knowledge of his condition), people falsely assumed he was being a jerk and/or that we were horrible parents. His behavior can be nontraditional, unusual and confusing. People are more accepting of him during his "Aspie" moments when they understand that he can't always help how he reacts and they often help me and/or my husband rather than judge us. Granted, judgment is flung around no matter what but it's slightly less pervasive when his behavior is defined in terms people can understand.

Finally, my son was born to my husband and I whether that is to his benefit or detriment who can really say but we have always been open about our lives because there is no shame in our game. Silence puts a strain on relationships. It can create an unintentional division between people and can often be the source of conflicts because, whether we tell people our struggles or not, they influence our behavior in ways that may be confusing or misinterpreted by those who are out of the loop.

Silence doesn't help others in the same position either. Although the specific struggles and challenges are unique to my son and our family, there are so many other families affected by autism and we need each other to cope. I hope to share what we learn in order to help other families. I also want to share the emotions, good or bad, that we feel so that others know that it's normal, that it's ok. Raising an autistic child is challenging to your very core and it doesn't stop being that way. It requires a strength and endurance only found after deep soul searching. If we search together, maybe we can make a better world for our children but we can't do it if we're afraid to talk.

I hope my son will forgive my openness when he is older. Right now, he knows he's awesome. He'll tell you that. He knows he is autistic and that he's been diagnosed with Asperger's Syndrome. As far as he is concerned, he is who he is and he is quite certain he rocks. He laughs at the term Aspergers because it's a silly word dreamed up by grown ups. I want to keep it that way as much as I possibly can and I hope that our being open about his diagnosis only affirms that he is a beautiful soul and there should absolutely be no shame in his game.

Thursday, January 28, 2010

Camp Autism

I remember when my son was young, I would see articles about autism and I'd think that, even though my son was challenging, at least he wasn't autistic. As far as I was concerned, autism meant he wouldn't talk, that he'd be unemotional, that he'd be so obviously different. I must have known something though because I'd often scan the articles looking for anything that might be like my son. I occasionally found hints in these articles but I'd always find something that didn't fit him and I'd sigh in relief.

As time went on, I started to wonder about Asperger's Syndrome because I knew of someone in our family who was diagnosed with it. Like my son, this child was very focused on particular interests and was capable of learning an immense amount of detail about that interest. I'd ask questions about whether my son might be similar to this child and was repeatedly reassured that he wasn't. In time, I learned that autism is so varied and is manifested in a wide range of degrees. It truly takes a professional familiar with autism in its various forms to make an accurate diagnosis.

When he was diagnosed, we crossed from one camp of parents to another. Before, I would be around other parents and, even though my son would exhibit unusual behavior, I still felt like I sort of belonged or that we'd get on top of his behaviors enough that we eventually would. Now, we've joined the many, many families affected by autism as well as the large community of families raising children with disabilities. I feel arrogant now at how relieved I used to be when I thought we were a "normal" family. I have crossed over from the "normal" parent camp to the "disabled" family camp.

Before today, my interaction with my new camp mates was via the internet. I read heart felt advice typed on autism forums, viewed blogs posted by a mom in my shoes and, more personally, chatted with the mom of the autistic child in our family about this new camp I'd joined. Today, however, I was able to meet some of these moms in flesh and blood, to hear their stories, sense the similarities and differences of our experiences and to laugh about things only we could understand. It was a relief. Now I realize that this is the camp where my family belongs. Of course, we'll still spend time with our former camp mates but with a new understanding of who we are. It's not that we love our former campers less than before. We just have acquired a new accent that requires translation around those raising neurotypical children.

Like speaking your native language, it's nice to speak with ease and freely without translation. However, I will strive to bridge the gap between our two camps. We're all human after all, one no better than the other, and we must preserve the bond of love among us by forging deep understanding of one another.

Wednesday, January 27, 2010

Finding wisdom

For 5 years, I could not understand my son. He was such a unique person from the very beginning, a child who struck everyone as special - not just us parents and his grandparents. He was special like all babies are special but he was a little extra special in ways no one could quite put their finger on. He stared at you with eyes that seemed to go right through you. He certainly penetrated our hearts.

The signs were there but were subtle enough that pediatricians and, later, psychologists didn't pick up on them. We took things that he did for granted, not realizing that these idiosyncrasies were hints of what made him so special. He woudn't breastfeed. He'd pull away and fight me even as a newborn when I tried to bring him to me. I thought I didn't know what I was doing. He would let us hold him but he mostly preferred to sit in his bouncy seat. He often slept there as well.

He cried for hours at night and was finally (after many doctor appointments and a change in pediatrians) diagnosed with reflux. He was covered in eczema and itched all over.* He would freak out when he saw flashing lights - it distressed him immensely.

As he got older, new things would crop up: he hated getting his teeth brushed. The pediatrician told us that we should hold him down to brush his teeth. After a week, he said, he'll stop fighting you. He didn't.

He made the tantrums of other children seem mild and amusing. Certain sounds terrified him. I never vacuumed the house when he was home. We stopped using timers/alarms because he'd react so badly to them that it seemed cruel to continue using them.

He'd hit and kick doctors when they tried to examine him. I'd tell them he was scared and they thought I was coddling him. They suggested I was making him "this way." Early on, we sought professional help. The psychologists just said he was a smart kid with some anxiety.

He knew his ABCs at 18 months, was counting to 100 before he was 2 years old. He could read by 3 and knew the names and locations of all 50 states. He recognized within a few seconds of a song whether it was by Mozart, Vivaldi, Beethoven by the time he was 2. He was special.

It took years. Years of wondering what we were doing wrong. Years of trying to explain our child to people confused by him and questioning us. Eventually, our extended family began to suggest we have him evaluated again. We did. We went to someone who was a well respected psychiatrist at a nearby university who had treated children with many, many conditions, including autism and, specifically, Aspergers.

The psychiatrist was confident that our son had Aspergers, that he had high functioning autism. He said he would bet his house on it, that he was classic - he fit almost all of the criteria. Our life changed yet again. From not knowing anything at all to having a diagnosis we then shifted to the next stage of needing to learn as much as we could about Asperger's.

Meanwhile, his behavior was becoming more difficult. He resisted school as if each day was the first day of school and many times I had to pry his arms or legs off of me so I could leave. Parents often dread the first day of school for their kids, and I dreaded every school day. We faced the painful separation each time because he needed it and we needed it but it never was easy.

Dealing with a diagnosis such as autism is multifaceted and multilayered. Everyone in the family has their own grief to process and that grief changes from moment to moment. At first, we were immensely relieved because we finally had answers. Next, and it continues to this day, we had to accept that this is incurable and we may only be lucky to modify some of his behaviors so that he'll be able to function as an independent and happy individual. His future is so uncertain and has so many scary possibilities that I can barely focus on it. In order to survive, I have to focus on now, focus on the issues that I can work on now and hope all this work will lead to a good future for my son.

My son is dear to me. He'd have to be. When he's having a difficult time, he says mean things to me. He has bitten, slapped, hit, and kicked me yet I love him and tirelessly work to help him adjust to the neurotypical world. He is still the baby I held in the hospital and sang softly to. He's still the baby whose hair shown golden in the sun as I watched. He is so brilliant yet is so confused about this weird world he fell in to and all I want is to help translate it for him and for him to know that his mom and dad will move mountains to help him. At times, we may be frustrated with him and with our life but we refuse to give up. When times are at the hardest, we make ourselves pause and dig down very deeply into our souls and grasp that divine wisdom and strength in our hearts, filling us with the hope that is essential for his future.

*According to parent anecdotes (and perhaps in the research), children with autism have been said to frequently have allergies (such as manifested in eczema) and digestive issues.
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