Nanny 911

My daughter always amazes me by being attracted to TV shows that fill some of the academic, behavioral or language gaps in her life. She loved poko who taught her about sharing and feelings, She loves funniest home video when she needs to bridge the gap with family members and share a laugh. She learned how to read and greatly improve her vocabulary by watching between the lions religiously. And now she is really into nanny 911. It’s interesting that a child who is very rigid, has poor frustration tolerance and trouble seeing other’s perspective would love a show that shows just that in other children. She invites me to watch along and we discuss the feelings, facial expressions and communication abilities of the family members. She’s starting to see the recipe for success -rules, respect,+reinforcement, and communication. Belle went off to school this morning a little concerned about a problem she had with a staff member yesterday and we both agreed respect and communication is all that’s needed. She came home glowing!
Thanks nanny 911!

I have a case of the if only’s

I don’t get these very often considering how difficult it is to make decisions regarding what’s best for my daughter or even to know how to plan out a day, but right now i have some regrets about things and it’s weighing on me. She loves Halloween, dressing up and dressing her dog (and horse) up, but she does very poorly with contests. At 12 she has had many experiences with contests and knows that you can’t always win, but has won enough times to think that the odds are in her favor and the judges will think the same way she does (that she’s the best). there have probably been times (in school) that have worked to our disadvantage because people have fixed the results of a contest because they know she likes to win and love to see her happy (and hate to see her angry!)  So, to make a long story short, we went to a doggy costume contest and she didn’t win. to her credit, she didn’t make a scene, or get violent- she even waited until we got to the car to express her disappoointment, but the sadness she expressed made me realize that she has a long way to go to understand contests, judges, winning, losing, subjective opinions and the joy of just participating.

on top of that-she chose to be a anime character for halloween and then she was upset that nobody knew who she was. It’s her favorite holiday and it’s riddled with disappointment and frustration- i guess that’s life, but it’s tough when you have no social life and no friends and look forward to a few events that don’t work out as your expect them to.

so what are my “if only’s”?

• if only i had refused to go to the pet costume contest
• if only i had desensitized her to losing a long time ago
• if only i hadn’t let her be a mysterious character for halloween
• if only she didn’t have asperger’s syndrome (ok i said it, but i only feel like that on my “if only” days)

rounding up!

We’re celebrating Belle learning a new concept- rounding up. $6.99=$7, .99=$1. etc.  Having struggled with math, she didn’t understand the way the store labels things is deceiving and that if your really want to budget your money and compare prices you usually need to add a penny. I’ve been trying to explain it for several months and yesterday she said to me, “so this one says 3.99 and that means $4, right?”

I was so happy that she got that abstract concept.Then i went on to introduce the subject of taxes and the government- we have a long way to go there, but it’s amazing how trading card shopping can motivate someone to learn very diffficult concepts! Go webkinz!

the dog dilemma

we were invited to go with our neighbors to the pet shop to look for a puppy this week (which is one of our favorite things to do). the local pet shop has a great sampling of popular mixed breeds so it gives you a chance to hold them and see what they look like before you decide on the breed you want, but the prices are very high and the source is questionable so our friends were not planning to buy one that day.

Of course, we all fell in love with a puppy. it was the perfect breed, size, gender, temperament- but they wanted $1000 for it! so our neighbors cuddled and played with him and said good-bye to go home and research the breed on the Internet to find a local breeder with dogs for 1/2 that price.

well, my daughter couldn’t believe that they would let that one go. she doesn’t have a good concept of money, but she does understand that there are a lot of different things to consider when getting a pet and that they all have to fit or it’s not the right match (we bought a horse last year and researched for 6 months).

since Monday i have heard almost daily agitated complaints about why they didn’t get that puppy. “It wasn’t sick, it was perfect, it was cute, it was a good temperament!”

the only response i can give her is a prompt to help her come up with the answer herself “but what wasn’t perfect? why didn’t they buy that one?

and then she “remembers” and stops whining and says “oh, that’s right it was a thousand dollars- i hope they find one they like on the Internet”.

many times she is telling herself a story and getting upset about it and all i have to say is, “is that true” and she relaxes and says “no” (it’s much more effective than if i tried to convince her that it’s not true)

and it’s over- we move on

Conversations with Belle- by Dad

What is a Canadian?

Belle had seen something in a cartoon about people from Canada. Keep in mind she is 12 years old. “What is a Canadian?”, They are from Canada I told her. “Do you know where Canada is?” I asked, She told me no. She was surprised to learn that she had been there, that we hosted people at our summer home from Canada and that I look at Canada every day from my office window across the Detroit River.

Basic things like this can be taken for granted by us, or not put together by her from school last year. However, the good news is Maribel is asking, inquisitive and learning.

What is a Bad Word?

Today Belle wanted to know what a bad word was, who decided words were good or bad or what is really  wrong with these words? “Are people afraid that if you hear it you will say it?” she asked. At times, Belle seems to focus on something like this and will ask over and over – what is a bad word and what are Peggy and I really worried about? Recently she has asked about violence and horror also. “Why can’t I see it on TV? Are you afraid I will do something?” she asks.

On the surface it seems like an obsession. Questions over and over, from every angle. A deeper view would be is that Belle is asking pretty profound questions about wrong, right, morality, control, self righteousness and the like. She is trying to understand the crazy world around her. Even with her speech and language issues – she comes across unanswerable questions. “Who decided a swear word is a swear word?”  I sit back and say that is a good questions.

The influence of TV

Maribel doesn’t have any children in the neighborhood or school that call on her to play. Most of her days in the home are watching TV or working on the computer. We try to get her out and about including her daily horseback riding. That said, she watches a lot of Animal Planet and likes cartoons like the Simpson’s. She is focused on the age rating of shows and is constantly trying to understand why we restrict or limit her access to violence and language. “What are you afraid of Mom and Dad?, Just because I hear it, doesn’t mean I will say it or do it”. I talked to Belle about the influence of TV – whether it be ads, shows or movies. We talked about how sometimes people learn things on TV that seem cool or make people laugh, but are really inappropriate. She seems to struggle with our role as parents and is trying to understand why we do what we do. “What are you worried about Dad”. The answer is the world!

Music

Maribel listens to her IPOD everyday. When we are in the car, she has to use it when we drive. She is currently listening to Worship Jams. “Dad – what is The Savior? What is the Son of the Lord?”  Maribel didn’t go to CCD instruction like our boys. Getting her to sit, listen and memorize was out of the questions. She also doesn’t like Church because of the singing and load noises. So I explained about Jesus and his relationship to God. “Is God a spirit or a person? Is he the alpha boss of all the people? Does he have white hair? How did Jesus die and come alive?” and then “hey, Dad, I need to learn more about this stuff”  I never stop being amazed about what she can learn and how/where she will pick things up

Reincarnation

Yesterday I was trying to get a hug from Belle, which can be a challenge. I asked, “Belle – how come the dogs get a better hug from you than me?” – “Well, Dad, maybe after you die you can come back to earth as a dog and I will give you a hug”

Grandma

“Grandma is getting older”.  This was prompted by me telling Belle that her Mom turned 50 this month. “Is she going to die soon?”. she asked – I clarified “are you talking about Mom?” – “Yes” I explained that 50 is young and her Mom could live another 50 years to which she replied, “then Grandma is getting old and I don’t want to lose her. And who is going to record my favorite shows when she’s gone?”

animal planet

thank God for animal planet!! maribel watches it daily and for many hours. she loves the emergency vets, surgery, dog training, breed info, animal care, animal rescue/neglect cases, exotic and wild animal info and of course, funniest animal shows! It provides anytime information, education and entertainment and can be a best friend when the hours of loneliness get long.

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.

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.

filling the social gap

Autism is a social disorder and unless you live with it or someone with it you can’t understand the impact a social disorder has on one’s life. There are huge gaps between my daughter and her peers and many lonely days- because it’s hard to be with her as a friend and because she pushes other kids away. Her motto is- “I don’t need friends” , but when her one true “friend” is around she is sooo happy. she also has her brothers, her cousins, her sitters and other neighbors who love her and the summer is filled with all of these people. Now i’m looking ahead and know that her brothers move away and go back to school, her best friend leaves in august for the school year and everyone gets busy.  How do we fill the gap? Well, i’m always here, but i’m mom and she should be growing independent of me so we need other options. My plan !) pets- our dog and horse fill a huge social gap. Belle sees them both as her friends and when she is with them she gets more social attention hanging at the barn or taking the dog for a walk.  2)planned trips to brothers or cousins gives us social events to look forward to. 3) giving her her own cell phone allowed belle to make calls to her brothers or friends every day when she was missing them and the discussions about her special interests that she craves. 4) peer to peer support programs at school. without this belle is isolated, misunderstood, excluded and depressed. I’m hoping to do a lot of work on educating staff and peers, including peers in afterschool outings, and supporting established school programs.  It’s always important to work on Belle’s self confidence, self esteem and independence. Peer education is more successful if the child with autism can give a little and be a participant in filling the social gap.