Butterfly grew up with food intolerances and was diagnosed with ADHD, Asperger's
Syndrome, and learning difficulties. Now she struggles with OCDs.
This is the story of how we have faced these challenges.

Monday, August 16, 2010

So Then, Here We Are..

Of course, this isn’t all of Butterfly’s story, but I’ve tried to hit the highlights of her young life, including examples of what kids like her go through, some of the battles and triumphs we’ve experienced together, and the issues that might be helpful to others. And so I come to my final post for awhile I think, although I will continue to add resources, photos, and the occasional page, and perhaps even a post or two if something noteworthy happens. So obviously I can’t exactly write “The End” on this story, because it just isn’t. (At least, I hope not.) While this post will bring us up to present day, Butterfly still has many challenges ahead. From what we’ve experienced just recently, clearly the gates of the world are not going to just swing open and welcome her. There are still struggles to deal with, some hurdles for her to find her way over. Moreover, going through pictures, as I have been lately to organize them better, I just might remember something else that may be helpful or insightful to others raising an ADHD or Asperger’s child or kids with food intolerances or learning challenges, or to someone who wants to attempt homeschooling.

(For newbies, this is a sequential story of one child’s life, so please start at the beginning, which would be the bottom of the last page. I know. It’s a lot like reading a book from back to front. Technology. Is there a way to reverse it? Not technology ~ the blog. )

A few nights ago, Butterfly came into the living room to sit with us to watch a music program. She got up to go outside for a few minutes (to work out her hyperactivity) and Hubby, who’d been sitting beside her, sort of sagged into a relaxed lying down position across the couch. After awhile, Butterfly came back in and seeing her dad taking up pretty much the whole couch, shrieked at the top of her lungs that he was hogging her space. I looked at her and said, “why are you screeching?” She looked at me. I said, “just say, please move over Dad, I’m back.” She tried it, and of course, it worked. Now if you think that made an impact, it didn’t. Almost exactly the same thing happened again about an hour later.

Yes, we taught her manners. Moreover, Bud’s Nanna taught her too. (People were a little afraid of my mother and just naturally wanted to do as she said. I asked her how she managed this, but she just shrugged and said, “either you’ve got it, or you don’t.” Apparently I don’t. My family always took off their shoes when they entered my mother’s home. I can scarcely get them to wipe their feet.) Anyway, we even got video cassettes of that annoying purple dinosaur teaching manners to a gaggle of fresh-faced little kids who were already freakishly polite. Moreover, my daughter wants to please us and honestly does her best. But in that moment of stress, surprise, or when something runs counter to what she had in her mind, all that she has learned goes by the wayside. She reacts. She knows what she should do, if she only stopped to think about it. But Aspies don’t stop to think, they react. No, it isn’t a matter of behaviour and punishment, as people who tend to judge others like to believe.

Butterfly doesn’t like people. She often says so anyway. Over the years she’s experienced a variety of social situations with people, from the heartwarming smile of the older woman who received Butterfly’s name with joyful surprise, to the historic interpreter who gave Butterfly her cheerful attention, to the market customers who listened to what she had to say about my jam with smiles on their faces, there have been many positive experiences in her past. But what stands out far more for her are all those negative experiences: the aggressive people, or the disapproval of those who know nothing about Autism; the store clerk who carried on because Butterfly picked up an item from one shelf and put it down on another (geez, get a life lady); the presumptuous foolishness of the old woman who put Butterfly on the spot thinking she’d teach her to tell time on a clock face in five minutes; the ignorance of the nasty old man who glared at her in a threatening way, hollering that she needed to be whacked around; the teenage girls who laughed at her while she was trying to raise money for charity. It’s unfortunate, but it’s the nasty and ignorant amongst us who’ve influenced her view of humanity enough to make her shy away from human contact. This is because it has left fear in its wake. Oh, it brings a smile to her face to remember the nice people. But she just won’t take the chance if she can avoid people all together. Shame.

The unhappiest part of this is that she has actually learned some great social skills. Ok, she may never be the life of the party, and you don’t want to cross her, but while Aspies don’t “get” hinting around and can’t “read between the lines,” Butterfly has learned sarcasm, for instance. And she has learned to not react instantly to teasing. Some of the sarcasm she’s embraced she learned from me. When she would say something outrageous, I would look at her and say, “yeah, and I’m Queen Elizabeth.” At first this confused her, but by the time she reached her teens, this was a favourite retort to anything I felt was unlikely, and she would respond with a deep bow, an elegant wave of her hand and, “your majesty.” One of her favourite t-shirts is the one that says, “Sarcasm, just another service I provide free of charge.”

The teasing was a little harder on her and was courtesy of her dad. Over the years, I’ve noticed that the only way a lot of people can communicate with children is to tease them. Butterfly’s dad is one of those. I well remember the time I went out shopping alone while Butterfly stayed home with her dad. When I got back she came running to the car before I even stopped it and demanded to know if her father had green blood. Whaaa? She looked positively tortured by this, so I answered her honestly, “no, of course not.” To which she turned enraged and started screaming at her dad, calling him a liar... and more.

Ok, thanks Dad. Here I am wanting the child to learn about her world, for one thing, and also trying to teach her that lying isn’t a good thing, and here’s the ol’ man teasing her that he has green blood, like a vulcan. Annoying? I finally had to lay down the law and get him to cut back on the teasing... as far as was possible for him. She was getting so she didn’t want to stay home with him and she was spending far too much time being angry about really stupid stuff. Teasing has it’s place sometimes, but it can be overdone for any child. An Aspie really doesn’t get it, so maybe keeping it to a minimum, at least until they’ve achieved teenhood, is probably a good idea. Once again, by the time Butterfly hit puberty, she would simply gaze at her father in disdain, rather than getting angry... unless she was in reaction. The thing to remember here is that social skills are very much learned skills for an Aspie ~ they do not come naturally. And they learn from what they experience. So what you do and the way you behave is even more of an influence on your Aspie child than on other kids.

Here is a description of ADHD (Attention Deficit Hyperactivity Disorder): ADHD is characterized by persistent patterns of inattention and/or impulsivity-hyperactivity that are much more extreme than is observed in individuals at the same developmental level or stage.

Asperger’s Syndrome:
"Asperger syndrome (also Asperger's syndrome, Asperger's disorder, Asperger's, AS, or AD) is one of several autism spectrum disorders (ASD) characterized by difficulties in social interaction and by restricted and stereotyped interests and activities."
Don’t believe in syndromes? Well good for you. Stick to your guns. But for those of you who want to deal in reality, Asperger’s is on the autism spectrum, at the high functioning end. Aspies are not mentally retarded nor intellectually challenged; they have a hard time to manage or express emotions and social skills do not come naturally. They routinely have meltdowns when things don’t go as they’d planned in their minds (in order to cope with the world). No, they are not brats. They are frightened and confused when this happens, because when you take away what they thought would happen, or they are subjected to sensory overload, they are lost and often don’t know how to deal with it. It’s the way their brain works... or perhaps doesn’t work, that causes this behaviour. And no, you do not fix a brain malfunction with aggression or violence, although a mild shock is sometimes necessary in certain situations.

This brings us to picking your battles. If your Aspie honestly cannot cope with cleaning his or her room, nagging endlessly is only going to add oodles of unnecessary stress to both your lives and make the very issue of tidiness not only unbearable, but an instant trigger to meltdown. Back off and take it down to a few small victories, like getting your Aspie daughter, for instance, to return the things she uses ~ scissors, tape, pens, pencil, calculators, etc. Get her to bring the recycling and dishes out of her room at least. If you can deal with a few of these smaller issues on a day to day basis, it’s at least going to help with the larger concern, even if you still have to go in there to pick up the laundry and even if 647 socks somehow disappeared into the dark shadows of that room. Choose your battles wisely and with care. They have to be something that’s winnable, or can at least be taken somewhere in incremental steps. Constantly being at your child to perform in ways that aren’t possible will only increase your level of stress and destroy her self esteem. Ask yourself what’s more important.

On the subject of priorities, one time we invited one of Butterfly’s friends to a social event. She had really wanted this friend to be there with her, so even though we had to change the original plans to accommodate one more, we did so. Her friend had accepted our invitation, but when we went to her house to pick her up, we were told she couldn’t come after all, because she hadn’t finished cleaning up her room. It was a mystifying decision. Yes, discipline is important and we all parent in our own way, but why not choose a punishment that doesn’t impact on other people and their plans? To me, it’s a matter of consideration for others and of priorities. Butterfly’s room may not be neat, but I will be immensely proud of her if she turns out to be the kind of person her friends can count on to be where she said she’d be, when she said she’d be there. Priorities. And no, Butterfly did not have a meltdown at the change in plans. She was upset, but she kept her composure.
With that in mind, I want to end this post on a positive note and reassure parents of younger kids with Asperger’s that things can get better with maturity. Butterfly no longer panics in stores when they are out of something she wanted. She no longer stomps toward me at a run with her mad face on, shrieking the whole way. Instead, she gets annoyed that they’re so often out of the very things we want, and if it’s something she had big plans for, she’ll ask if we can look at another store for it. Much, much better. While she still reacts to situations and shrieks more than anyone should, she can and does fall back and regroup when dealt with calmly. She is learning to cope with change better and keep her temper in check when things don’t go well.... well, sometimes anyway. As I said at the beginning of this post, there are still challenges and hurdles to overcome, but we will all work on them together, at least until Butterfly is ready to spread her wings and fly out into the world.

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