Description:
Life in the Midst of Asperger's Syndrome, Early Onset Bipolar and General Chaos.
Contents:
An Invitation to Belong
This week my list of thanks is pretty short -- but as usual, once all is said and done, my one item packs a pretty powerful punch. Its just a little reminder -- in case I might have forgotten -- that God is still there, listening and actively answering at least a few of my many prayers.
It all started on Friday. Big Brother came home from school ecstatic. He then told me to look in his backpack for a big surprise.
Yeah, I'm a sucker. I complied.
But much to my surprise, no snakes, frogs or other creatures jumped out at me. Instead I saw a small, folded piece of paper. I pulled it out to find an invitation to a birthday party.
Seems a boy in his class was having a party. It was at one of those inflatable places -- you know, the ones that parents hate but kids love.
No sooner did I finish reading the details, then the chorus of "Can I go? Can I go" began.
That was Friday. The party was last night. Big Brother was a tad hyper-focused on the event, obsessing on the perfect gift, the perfect wrap and the perfect time to show up. Yesterday after school he was so excited he could hardly contain himself.
It seemed odd. He had never mentioned this kid before. Its not one that makes the usual "friend" list. At one point, my guy mentioned everyone in his class was invited. So what was with all the excitement?
Then I remembered. Actually, it would be more accurate to say I couldn't remember. I had no recollection of the last birthday party my 11-yr.-old had been invited to.
You see, he's never really belonged. Always the odd kid out, the one made fun of, the last to be picked on any team, my son often suffers in silence. I never knew how much he noticed until last night. And that my friends, did some serious tugging at my heartstrings.
But not last night. At least for those few hours he felt important. He felt he was special. And I'm happy to report a good time was had by all.
To the parents of the birthday boy -- I just want to run up to you and give you a great big hug. But then again, that may backfire and scare off any future invitations. So instead I will just give thanks. You've made both my son and his mom very happy today.
Should I or Shouldn't I?
As those who have read this blog can attest, I'm what some would call a straight-shooter. I hold little back, bearing my soul on a regular basis. That's because, for me, I've found that facing something head-on is the best policy when it comes to affecting any kind of positive change.
Except in on area.
With my son, I have always been extremely forthcoming with his diagnosis and his challenges. I've weighted to pros and cons and have come to the conclusion that information would do more good than harm. That people, not given the truth, would come up with conclusions that were much worse than reality. So in turn most friends, family, teachers and acquaintances know he is autistic.
The same cannot be said about my daughter with bipolar. Her diagnosis remains private, something known only to a handful of family members, a small group of friends and the professionals that deal with her -- oh, and of course all of you in Blogland.
Now before you berate me for my seemingly double standard hear me out.
First, my daughter was much older than my son when she received her diagnosis. Although we knew something was not quite right for years, she was not officially diagnosed until a year ago. Even then, many of those closest to us were not very accepting of these findings.
We'd here things like, "There's nothing wrong with her, she's just reacting to her brother."
Or, "You know those doctors, they're so quick to put a label on a child."
Then there was the infamous "You know, if you keep looking hard enough, you're bound to find something -- even if its not there."
Yeah, like I would wish this on any child or family.
I guess they could not believe what they did not see. To the naked eye, my daughter appears calm, shy, quiet and even tempered. So much so that even the professionals were non-believers when we first described what has transpired within the confines our four walls -- that is until they saw it themselves.
Ironically, then they started telling us how we needed to do something about this serious situation or social services might be called in. Funny, when we said the same thing, all we got were platitudes. Ah, but that's another subject all togehter.
The second reason is more problematic. It involves the stereotypes and stigmas that surround this condition. With autism, there seems to be more general awareness. Thanks in part to the many celebrities and high-profile people who's lives have been touched by it. In turn, as ignorant as many can be, it is usually perceived as a physical ailment, not something a person can help or will away. Although we still have a long ways to go in creating awareness, autistics are not seen as crazy or mentally ill.
I wish the same could be said about Bipolar, but at least in my small corner of the world, it cannot. I can't tell you how many people, not knowing my own daughter is among them, will tell horror stories about the crazy person they once knew who had Bipolar. How these people are insane and unstable. The list goes on and on. To sum it up, misconceptions abound.
Now given my outspoken nature, my first reaction is to scream at these ignoramuses at the top of my lungs. Tell them how wrong they are and how this disease is a treatable one, not a death sentence.
But then another part of me takes over. Its the mama bear in me. The one that wants to protect my daughter from being the butt of jokes or the subject of gossip.
You see, many of these self-proclaimed experts happen to be the parents of her friends. They run in the same social circles as we do. So, instead of yelling, I sit in silence. Not because I am ashamed of my daughter, but because I want her to lead as normal a life as one can being raised in this house. I would like to create more awareness out here for this devastating illness. Just not at the expense of my daughter.
So, am I wrong? I would really like to hear other perspectives. How others have dealt with their child's illness and if they have divulged the facts to those around them. Because in the end, I want to do what's best for my kids. Too bad its just not always clear as to what that is.
Am I Asking Too Much?
I like order. I thrive on logic. Always have. I'm always curious about the whys and hows of things happening the way they do. That's why I embraced Applied Behavior Analysis (ABA) so well. You see a behavior, you look for antecedents, or causes, and then you can predict a logical course of action based on that information.
Well, for reasons unbeknown to me, the Good Lord has seen fit to cure me of my need to have all my little ducks in a row. I guess that's why I have been blessed with children that defy the very logic I seek.
I've searched high and low for some patterns, some reasons for the fact that some days are good and some are bad,. Lack of sleep, certain stimuli, diet, stressors -- all these things have been analyzed ad nauseum, but still no clear patterns have emerged.
And this my friends makes me a little crazy. Take this weekend. Saturday was an absolutely glorious day. Big Brother was determined to make money for a toy he wanted. But not too determined. He didn't have the blind ambition he sometimes possesses in his quest to get what he wants.
He was able to complete tasks, take direction and even handle plan changes. By the end of the day he had earned a well-deserved trip to Target with his dad to make the big purchase. To top it off, twin sister spent the day in the snow and baking and showed no signs of her usual anxiety. Big Sis was at a friend's house most of the day and the little guy -- lets just say he was being three.
Why things were so calm it almost seemed -- normal. I was able to catch up on paperwork, organize a couple of closets and even dealt with the bills. All the while, I kept thinking, -- so this is how normal people live.
Conventional wisdom would lead one to believe that things must be improving and that we were indeed on the upswing. But as we went over in a previous post, we're not exactly your conventional family.
I had to take a few deep breaths to ward off the urge to succumb to a fantasy of normalcy, but in the end I prevailed. And it's a damn good thing I did.
Because like clockwork, Sunday came and things promptly fell apart. Mind you, nothing was different. No changes in schedule, no unusual stress. Just Sunday. And from the get-go we knew we were in for trouble.
Unlike the previous day, Big Brother could not handle a thing. The slightest noise sent him reeling as did any meal that was served, any suggestion that was made or even sheer silence. This in turn sent his sisters over the edge. And the little guy, wanting desperately to be like his big brother, emulated all sorts of bad behavior.
So here I am today left scratching my head. Because when the door finally opens and the kids walk in, I have no idea what I'll be facing. Ugly green monsters or sweet angelic beings? Your guess is as good as mine.
And deep down, I find my self yearning for something very illusive in these parts. Consistency. Some semblance of logic. And that leads me to think, "Am I asking too much?"
The Most Important Thanks of All
Today I've had a cloud hanging over my head. Its been a rough week and I'm so very tired. I even broke down last night, wondering if I could handle what God has given me.
I had a post already started in my head. I was going to talk about all the things that have gone wrong. How hard life is, with no end to our struggles in sight. But then something happened that stopped me dead in my tracks.
I belong to a local group of parents with kids on the spectrum. Sometimes we'll meet, but mostly we communicate through an online group. Recently one of our members wrote about a friend. How her son, in his mid-20s and with Asperger's Syndrome, recently committed suicide. Seems the world just became too much for him to bear.
What was more shocking than this initial news was the outpouring of responses that followed. Post after post came in from other parents. They talked about their own children who are currently struggling or have struggled with suicidal thoughts. One boy is currently in the hospital, his depression taking a downward turn. He was hospitalized after his mom found out that he and a couple of other children had gone so far as to develop a suicide pact.
All this from a small group in a small city in the middle of the country. I just have to wonder how many of our children are in the same boat. And why?
You always hear how people with autism feel like outsiders looking in. Like everyone else is in on the punchline of a joke they just do not get. But this happening brought it all home for me. How great these feelings of isolation, of depression and of not belonging must be. And how the world can be such a cruel place.
So today, when my children get home, I will wipe the slate clean of all past transgressions and give each and every one of them the biggest hug I can muster. Because no matter how bad things are, they are still here with me. Thank God we still have the chance to understand each other and share our lives together.
We do not know what the future brings. But today, I am most thankful for my children -- and the fact that they are here sharing the good, the bad and the ugly with their worn out, but very proud momma.
Second Thoughts
After having a few days to mull over Big Brother's IEP meeting, I realize there are some things that stuck with me. Yes, it was a good meeting overall, but over I've come to realize I hit the same mindset that I encounter year after year.
"He doesn't come to class prepared."
"We put the material on the board, but he doesn't write it in his planner"
"If I let him off too easily how will he learn?"
And my personal favorite:
"Why won't he tell us when he needs a break."
It doesn't seem to matter how much literature they're given, how many meeting we have, how many tests they're shown, the result is eerily familiar. Heads nod with understanding, I see's are uttered, but -- and this is a big but --in the end.the mindset remains the same. When push comes to shove, the expectation is that these kids on the spectrum -- who appear so normal to the naked eye -- should be able to do what those around them do. If not, it is often seen as a matter of willfulness, of manipulation or just being downright lazy.
How can I say this? Easy. Phrases like "he's digging his heels in", "he could do it when he wants to" or "he's just not trying" are dead give-aways. They reveal the lack of understanding that my child's problem is based in neurology, in wiring -- and not in conscious choice.
I think the problem is bigger than just my experience. Our children being misunderstood is such a system-wide problem. A recent article in the Philadelphia Inquirer, The Reform Math Problem, talked about how new trends in math instruction -- making instruction more verbally based, abstract and unsupervised -- go against everything that we know about the learning style of those with autism. It goes on to discuss how children on the spectrum are now floundering in a subject that traditionally has been a strong suit for them.
I always find myself surprised, that in this day and age, so many educators truly don't understand autism. They say they do. But when you think about it how can they?
Its hard enough for us parents, who live it every day, to understand the many complexities that make up our kids. Even experts can't agree on causes and successful interventions. Then comes that fact that each child is so unique, there is no one strategy that will suite them all.
Add to that the fact that most teachers and special education professionals never even studied spectrum disorders and you have a recipe for disaster. Many a seasoned teacher finds themselves in a situation where techniques that have been tried and true for years fail to reach this strange, foreign child. And since they have been so successful for so long, the response is to not question the strategy, but blame the child.
I used to think that the solution was awareness. But now I realize that's only the beginning. I've come to believe that biggest job requirement is a love for the work. And a willingness to get inside the head of a child that challenges conventional wisdom.
I'll be the first to admit that my boy is not the easiest to deal with. Anyone who teaches him must who appreciate his many quirks.. Understand the motivations behind the seemingly bizarre actions. And truly enjoys my son not in spite of his challenges, but because of them.
In the end I guess I question whether it is fair to insist on inclusion and mainstreaming. What good is it to be in a class where the teacher is forced to handle an autistic child? You run the risk of fostering resentment instead of learning. It is unfair to think that all educators will be good teachers to our kids, just as it is unfair to think that all teachers should be expected to teach second grade.
As for solutions, I don't know. At the end of a long evening, I'm just putting a lot of my rambling ideas out there as thoughts to ponder.
You Said What?
Today we had Big Brother's annual IEP review. I was a little nervous because I found out his old school, knowing he was transferring, pulled everything out of his existing IEP and filed it with the district. And they wondered why we didn't want to be there anymore.
Given our previous experiences with these meetings, I was afraid we would have to fight tooth and nail to get even the most basic accommodations and goals put back in to the document. So, I came armed with all the reports -- and believe me we have lots of them -- as well as a four page parent agenda going over every detail of the IEP.
Silly me. There was no need. Unlike previous meetings, the professionals at his new school were just that. Professional. They came prepared, presented well-thought out material, listened and took suggestions without getting defensive. For the first time ever -- we had a true, collaborative meeting.
I have to say, I'm floored. I think I might actually be in shock. The experience was so very positive. And that's a new one for me.
That's not to say we don't have our issues. We do. But for the first time, I feel like everyone's on the same page when it comes to working them out.
So on this belated Thankfulness post, I am very, very thankful for quality educators. For their dedication. Their hard work. And their willingness to take a challenging kid and do what it takes to help him succeed.
Step Away From the Box
The other day a friend alerted me to a recent article in the New York Times. Titled, A Powerful Identity, A Vanishing Diagnosis, it talks about how revisions are being considered to the new DSM, or psychiatry diagnostic manual, due out in 2012.
Looks like the powers that be want to do away with the Asperger's Syndrome and PDD-NOS labels, putting all those affected under the umbrella of "Autism Spectrum." Diagnoses will be made according to the severity of the disorder, i.e. severe, moderate or mild.
I can tell you from what I've seen online, there's been a lot of opinions on both sides of the fence on this one. Some argue that Asperger's Syndrome in particular has been around long enough, and that those diagnosed identify with it. To delete this as a diagnosis would be taking away part of their identity.
Others say that this change has been a long time coming and that whether a person is severely autistic or has PDD-NOS, they have the same difficulties. The difference is a matter of degree.
I'm not sure what I think about this yet. The jaded side of me sees this as a way for the powers that be to get out of providing services -- even more than they've done already. If my son is no longer Asperger's, but mildy autistic, does this mean he only needs mild supports? I shudder to think of this.
On the other hand, autism is a spectrum. There are so many misconceptions regarding both Asperger's and PDD-NOS, it would be nice to call a spade a spade. I remember during on fateful IEP meeting, we discussed what interventions were appropriate for children with autism. One well meaning, but obviously uneducated, school professional commented, "But your son isn't autistic, he has Asperger's."
I nearly fell from my seat to hear this so-called expert spouting something so illiterate. Maybe with this new diagnostic criteria, this type of ignorance will change.
No matter which way it goes, there is a theme that has been on my mind a lot lately. And that is the tendency the medical profession, the educational system and even some of us parents have to place our children neatly in one box or another.
As parents, myself included, I think we sometimes look for a label so we are looking for answers. We try desperately to make some sense of things that seem so much out of our control.
I don't think other parties are as altruistic in their motives. The medical profession looks at symptoms. If you check box A, C and D, you have autism. If its box B, E. and F you have ADHD. The problem here is that this is not a particularly holistic approach and our children can not be defined simply by some multiple choice answers.
As for the educational system, I've always seen their approach as One Size Fits All. If your child does not fit neatly into the self-proclaimed "right" way to learn, they are automatically labeled as different, difficult or oppositional. This is totally antiquated, because there is so much research out there that tells us that learning styles can be unique as the individuals themselves. How many children have been told there were bad students, when in fact they were just not taught properly? I shudder again.
What it comes down to is the fact that no one label, whether it be Autism or Asperger's, can adequately describe our children. They are all unique beings, with their own set of abilities, challenges and potential. I think the world would be a much better place if we just threw away our boxes and started from scratch.
Your thoughts?
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