some things are just so hard to understand

it’s a very complicated world with so many mysteries, a communication disorder only makes it harder to get by day to day. My daughter wants the dragon webkins. she’s wanted it since it came out in june and we weren’t able to get one of the few that were released. She has looked and looked without getting too frustrated, just mildly disappointed, until she heard that a girl in our neighborhood has one and now her hunt has moved up to high gear. she’s had sitters calling hallmarks and limited too and then she turned to the internet and found out that, alas, they are available and selling on ebay for $300!! So…. they are possible to get, just not for us. these are things that i didn’t have to worry about as a child collecting trolls- they were on the store shelf whenever i wanted one or i picked what was there. Now there are so many factors involved in getting what we think we need or what someone else has or what we feel like we can’t live without. It all goes back to the jealousy thing that we’ve been dealing with all summer, mixed in with lack of understanding and blended with a social/ communication disorder.

well, she went to bed resolved to the fact that the first edition of a webkins dragon is just not in the cards for us and hoping that another will come out in a better color soon- maybe even green!! she does have a brain for marketing.

daddy’s little girl

all i can say is thank God for daddy. I couldn’t do this without him and we’re a great team. she loves her Dad and her life leans a tad more toward “normal” because of him. He’s firm and consistant, a great advocate, makes sure she always has what she needs (including a dog, lots of fish and a horse), includes her in every family activity, has very high expectations for her future, and loves her unconditionally. He is amazing!! Love you hub!

if all else fails collect some data

i had a couple of rough days and started to “awfulize” – after all the work I’ve put into regulating meds, behavior therapy, visual strategies and positive feedback, things seemed to be in a funk and falling apart. what do i do now? how do i know what variables are effecting what? how do i advocate for a child when her strengths are inconsistent and she’s regressing into a cycle of being defiant and rude? Well, i force myself to look at what is working, and what goes right (“thanks for being nice to that lady” “you sure were patient while i was talking to that man”) and then i make up some charts!!  One, a point system for my daughter to earn things she’s really wants (a webkins or a fox mask!), and then another a check off to tally up the exact frequency of misbehavior, defiance, even eating habits. Keeping track of details for a few weeks really helps to look at things realistically and to not get too discouraged. We are really the only people we can rely on so we can’t let ourselves down. Be scientific, be practical, be positive. things are usually better than you think.

do unto others

how do you teach someone who is oblivious to their effect on other people that they should be kind, thoughtful, generous, caring, and patient?

well, it’s not threats, punishment, consequences or scolding. For a child with autism those methods only lead to defensiveness and anger and the child seperates the punishment from the behavior. And… they still don’t understand the effect their rudeness or mean remarks have on others.

what does work? positive behavior support!!! PBS/ABA!!!  Model the bahavior, script the behavior, and reward the behavior that you want to see in your child. Catch them doing something right. It’s one of the things that will work with all kids, but it’s one of the only things that will work with kids with autism.

teasing to one can be torture to another

i never realized how complicated teasing can be until I had to teach the concept to my daughter. her tolerance for it fluctuates through the day depending on her fatigue level and, like most people, she only wants to be teased by those she knows and loves. Being 8 years younger than her brother she hasn’t had a lot of sibling rivalry and having special needs, she probably has been treated with kit gloves by relatives. People with autism have a hard time with “figures of speech” so most jokes would go over her head. now she’s older and her communication has improved so people often tease her a little as part of fun, affection, normal communication to preteens or to get a reaction. Now that she “gets” some of it she realizes that she dislikes most of it. I ended up treating the “lesson on teasing” just like i would any lesson- front loading, setting realistic expections for her reactions, scripting what she can say to respond politely, positive feelback for increased tolerance, explanations of how and why different families or people use teasing in positive ways and even a few “practice sessions”.  Of course, i had to teach her how to set limits and protect herself if the teasing seems to be getting so annoying that it borders on bullying.

we learned a lot about teasing this summer- you never know what we’ll learn about next!

self advocacy- the art of taking care of one’s own needs

yesterday held one of those golden moments that i would like to reflect on a little. my daughter broke out of her complaining, “awfulizing” cycle that only leads to more complaints and frustration and she decided to be proactive.  Every day her and her friend get tired and cranky with eachother towards late afternoon(she’s so lucky to have one friend and it’s hard to see them get mad at eachother when they usually get along so good) which, if her mom and I aren’t careful, will lead to someone crying or storming off.  But yesterday was a breakthough! Before they got to the “i can’t stand her anymore” mode, my daughter asked for a rest and asked me to tell her friend that she would play again in one hour. It was so amazing for her to be able to break away, read her body signals, problem solve, make a plan for later and really take care of herself and her friendship.  If only everyone could stop and take a rest before they hurt the ones they love!

ummmmm…can a child with autism look like a “brat”

oh man, lots of noise in the media about what autism “looks like” and if a bratty child could be mistaken for having autism. It’s actually funny that that should be discussed on national news when my life for the past ten years has greatly centered around educating people who didn’t understand autism about why my daughter’s behavior was the disease not lack of parental control.  Of course there were experts who had to explain that to ME first and then i went on the teach my other children, my husband, the grandparents and the rest of the world. the saddest thing is that the last thing these kids need is harsh or negative discipline. the only things that work have been clearly researched and proven effective- PBS (positive behavior support), a visual schedule, a communication system that they understand and can use, education of their peers and teachers to prevent bullying and mistreatment, protection from sensory overload, modification of whatever is put in front of them or communicated to them so that it’s in a mode that they understand AND use of and respect for their special interest (wolves, huskies, dragons, trains- whatever gives them a passion for life).

has my daughter exhibited “bratty behavior” ? yes, actually it’s very predictable when that behavior will surface-

• when there is a schedule change that i didn’t prepare her for
• when her expectations are different from reality
• when she’s tired and hungry and overwhelmed
• when she does’t understand what is being said or going on around her
• when she wants to do something that ’s too hard for her and she wants to do it perfectly
• when she’s being excluded
• when she’s not given choices
• when her disability isn’t being respected
• when she is having sensory issues that she can’t tolerate

i guess i could go on and on, but the thing to celebrate here is that we have learned why it happens and we have learned skills to prevent it or understand it and work through it if it does happen AND there are experts out there educating parents, families, teachers and really stupid shock jocks everyday so that autism will be understood and we will see more kids at Target with visual schedules and less having tantrums.

we love to laugh

belle craves a good laugh and she loves to share a joke, a funny story, a silly website and especially an episode of america’s funniest videos. it’s my favorite time with her- well, one of the many- and i can use a good laugh as well as anyone. i usually feel like i should be catching up on housework or something while she’s busy with a TV show, but once i join her and start laughing so hard that i can’t stop I wonder how i could get through the day without her and without a good laugh. she always knows just what i need.

riding the daily roller coaster

sad every night, happy every morning- hates everyone, loves everyone,-will never play again, “can i play?!”-mad one minute, not the next-giving up, then trying again, crying, then laughing.

It’s somewhat predictable- fatigue and hunger = a drop in mood and tolerance.

It’s important for me to take care of myself, keep it all in perspective, not blame myself for problems, and not worry that she’s ruining relationships or burning bridges.

autism is autism, girls are girls, adolescence is adolescence.

independence and socialization

just reminding myself that these are the most important things so that i don’t get discouraged. We work on these everyday- today belle went to the library with the neighbor with her own library card and her own money and i haven’t heard from her for 4 hours! Small successes.