Knowing The Difference

Ronnie loves the Three Stooges. He loves anything where people fall down, trip, get hit, stumble, etc. He will burst out laughing whenever he sees that on TV or in person.

One of our favorite interpreters told me that such is common among people who are Deaf. She said that almost every Deaf person she has ever known finds physical acts such as those very funny.

I get it but there are some times that Ronnie's laughing seems really inappropriate.

Falls are not always meant to illicit laughs. Stumbles are often accidents and the person doing the stumbling doesn't like being laughed at. A person fainting usually finds nothing funny about their situation. But it seems Ronnie can't tell the difference sometimes - or at least he isn't distinguishing when it is appropriate to laugh and when it's not.

I have often corrected him when his laughter isn't appropriate, but he seems hurt when I do that. (I don't do it in front of anyone.) I'm really not sure he is getting the message.

How do I help him distingush a pratfall from an embarrassing or hurtful fall? Any suggestions?

Affliction Day

This article below appeared in the Mansfield News Mirror, a Texas newspaper. Before reading it, consider the definition of 'affliction':

af·flic·tion   /əˈflɪkʃən/
–noun
1.a state of pain, distress, or grief; misery

I swear, if my school district ever wants to have an 'affliction' day, my child will not be the one that is afflicted. (Notice the non-blindfolded student laughing at the student pretending to be blind in the picture to the right.)

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Students Spend Challenging Day

The students at Mansfield High School have experienced learning on a whole new level. The past few days the students in Robyn Russell's Teen Leadership class have been preparing to have an affliction day. The students were blind, deaf or mute. They had to live one day the way a child or adult with disabilities would in an educational atmosphere.

The students were given tasks they had to complete with a partner who did not have a disability. One of the tasks was for each student to go down the hall and get a drink of water. Many of the blind students had their hands out to feel for walls and depended on their partner for guidance.

"I was very disoriented while walking through the halls," said senior Ryan Collins. "I have been walking these halls the last four years but as soon as the blindfold went on I had no idea where I was in the school."

Another activity was to color a picture of a tiger. First, the teacher asked the students to write their names on the paper. Most of them ended up being sideways or upside down. Next, they were given two markers and told to color a picture.

"I felt lost," said Shayla Blackwell, a sophomore. "I didn't even know what I was coloring let alone what color markers I had in my hands."

The students also had to complete a workout routine. The majority felt dizzy and embarrassed. All the students believed even in the short period of time they were disabled that one of their other senses became stronger.

Affliction day gave students a small insight into the life of a disabled individual. The tasks they completed were simple to those without disabilities, but they could tell that life would be much more difficult with a handicap. The students got to experience a few of the challenges having a disability creates, but there are many more such as discrimination in employment, higher insurance and for teenagers a social status that can be difficult to overcome.

Many of the students said walking in another person's shoes is the best way to experience their life.

Insensitive

As many of you know, I have a 19 year old daughter named Jessica. I adopted Jessica when she was 9 years old. She had spent most of her life in foster care, and along the way was both physically and sexually abused. In addition, she was diagnosed as an infant with brain cancer. She had a tumor removed and two years of chemo and radiation. The cancer and its treatment left her with a significant intellectual disability, and her time in foster care left her with a significant mental illness.

Jessica has, however, become a fine young woman. She does struggle daily to keep the mental illness under control, and she is striving to learn enough to be able to live semi-independently. She is still in school, and will stay there until she is age 22 and must leave. She is in a self-contained classroom and always has been.

So imagine my surprise when I received a phone call last week from a Navy recruiter. He asked if I was Jessica’s mother. I said yes. He then went into his recruiter spiel and I couldn’t get a word in because he was reading so fast from his script.

When he finally took a breath, I asked, “Have you met my daughter?” He said no, but that he was the recruiter assigned to her high school and was looking forward to meeting her. I asked, “Do you get any information about the students you are trying to recruit before contacting them, or do you just get a list of all student names from the school?” He said, “I get a list, and then I contact the students who are of age to recruit.”

I said, “Has it crossed your mind that some of the students you contact might not be qualified to enter the armed forces?” He said, “We work very closely with our recruits and are usually successful in helping them become the best they can be.”

I then described Jessica to him. This time I was the one not letting him get a word in. I told him of her background, of her challenges, of her sweet nature, of her desire to be, as he described, the best she can be. Finally I stopped, and then said, “Okay, now shall we discuss her recruitment?”

He was momentarily speechless, and then when he did talk, he stumbled all over his words. I decided to put him out of his misery, and suggested that perhaps in the future he might want to do a little more homework before contacting families.

I have always accepted Jessica’s challenges and love her for the person she is. But, I’ll bet there are some parents who are still saddened by dreams unfulfilled. Approaching such a parent with talk of Navy recruitment is just plain insensitive.

Today I am thankful for Jessica's tenancity.

Not Funny At All

Last night while I was ironing and folding laundry I watched a little bit of the TV show, America’s Funniest Videos. It’s not a show I watch regularly, and after last night, I may never watch it again.

Two things bothered me greatly about some of the videos shown last night. First, I saw several – more than three – videos of children on bikes or skateboards or motorized scooters and NONE OF THEM WERE WEARING HELMETS OR OTHER PROTECTIVE GEAR.

These videos were of the children falling or crashing. Apparently some folks find that very funny. I’m not one of them. Or maybe since Extreme Makeover Home Edition follows America’s Funniest Videos, the producers feel that they can address any serious injuries by building the participants a new house later.

Regardless of the humor factor of these videos, what message are we sending to children, children who probably already argue with their parents about wearing helmets and protective gear?

The second video on the show that irritated me showed three young women, college age it appeared, who were helping a squirrel get ‘unstuck’ from a tree. The squirrel had gotten its head stuck in a hole in the tree, and the three young women were tugging and twisting in an attempt to help it. It was pretty funny – at least until one of the young women yelled at one of the others, “You’re so retarded.”

Come on, ABC, you should know better than that. At least edit out that part of the video. Again, the show that follows America’s Funniest Videos does a fine job of disability awareness and sensitivity. So, surely AFV could also.

I’m very disappointed, ABC…if you even care.

(the video shown below is not from AFV, but it is representative of the types of things shown on AFV)

Too Fat To Adopt?

Adopting a child can be a very daunting task. I’m not talking about parenting an adopted child, but rather, the process of being approved to adopt and then finding a child. Potential parents can have no secrets. Your adoption worker and their agency are going to want to know what your salary is, your bank account information, what type of house you live in, your psychological history, what at least three of your friends think about you, whether you have ever been convicted of any crime and especially crimes against children, and your health history.

It’s a good thing that all my adoptions happened before I was diagnosed with Lupus and Rheumatoid Arthritis. I don’t know if I could have gotten approved had those conditions been diagnosed prior to my wanting to adopt a child. I honestly cannot imagine what my life would be like if Ashley, Jessica and Corey were not in it. So I wonder what would have happened if my health had not appeared perfect.

A family in the UK doesn’t have to wonder. Although they passed almost every investigation of their adoption agency, they have been denied the right to adopt. Why? Because someone feels the husband is too fat. Here is a link to the news story.

And this is not a one-time occurrence. A woman in Australia also was denied the right to adopt because she was considered obese. Here is a link to that story.

How do you feel about these stories? Is it better for a child to stay ‘in the system’ instead of with a Mom and a Dad, one of whom is considered obese?

My question is who decides which medical conditions are deemed ok for an adoptive parent and which are not?

Thankfully, in my case, my diagnoses weren’t present during my adoption home studies. I know I am prejudiced, but I can’t imagine anyone being a more suitable and loving parent to my three special adopted children than I have been. It worries me that the families in the two stories above may never have the chance to say the same thing.

Joel's Card Games

One of my favorite fellow bloggers is Joel at the NTs Are Weird - An Autistic's View of the World. His intelligence, insight and positive attitude towards life and other people has really helped me view the world from someone else's eyes - someone who is diagnosed with Autism but whose shared information can be easily applied to other types of disabilities.

Joel recently wrote a post called Card Games in which he discussed the difficulties that many people with Autism experience with touch, particularly in a romantic relationship. Joel, newly engaged, shared a technique, a card game actually, that he and his fiance use to make sure their shared touches are appropriate and welcome.

Their card game is simple - both Joel and his fiance made up a deck of cards, with short descriptions of a kind of touch they would enjoy. They kept their decks separately, and exchanged them with each other when they decided they wanted to enjoy some touch with each other. One of them would draw a random card, look at it (you don’t look until then), and, without showing the other, do whatever the card says.

Quoting from Joel's blog, "For example, you might draw a card that says, “Gently stroke my hair”. So, without letting your partner know what you are doing (but they know you are going to do something they like), you are able to touch your partner - and your partner knows that whatever you do is going to be something safe, which is important for many people, such as abuse survivors. You are doing something your partner has explicitly said is safe."

I think Joel's approach is brilliant and urge you to read his post yourself. I can't wait to brainstorm some other situations in which this approach would work, especially as it applies to Ashley and others who are deafblind. Her sensory issues are also quite intense, and I am sure Joel's approach can be adapted to help her make sensory experiences more enjoyable.

Thank you, Joel. I absolutely adore your blog and all your wonderful ideas. And, congratulations on the engagement!

18 and Contributing

As I’ve read in so many other blogs, it’s tough being a teenager with an ‘unseen’ disability. My son, Corey, is diagnosed with Asperger’s Syndrome. As a result, he misses many social cues and emotionally and socially is much younger than his 16 years. That was never more evident than this past Saturday evening.

Corey is in his high school JROTC. The group took a trip to an air station about two hours from home Saturday morning, and returned to the school at 6pm. Although he had ridden his bike to school, I decided to surprise him by picking him up, and then picking up dinner for us all. Imagine my surprise when I saw him get off the tour bus and walk hand in hand with a girl to a secluded spot under the trees behind the bus. This is the same boy who was JUST CRUSHED at the start of school because the girl he had been madly in love with decided she no longer was interested in him. And here he was, picking up the pieces and rubbing his hands all over them.

Setting my surprise aside – it really is a surprise to see for the first time your teenaged child engaged in ‘contact’ sports – I pulled the car up, honked the horn and gestured for Corey to come to my car window. I asked if he wanted a ride home – he didn’t – and what he wanted for dinner – he told me. And then before I could put the car in reverse, he and the girl were once again glued together.

I picked up dinner and formulated my ‘discussion’ plans. This is new territory for me, so I wasn’t sure exactly how to proceed. What I did was keep the discussion lighthearted but with a very definite message that couldn’t be missed, even by a child with Aspergers.

Corey is 16 years old. He told me the girl was 18. I know that’s not a big difference, but in my state, such contact translates to contributing to the delinquency of a minor for the girl. I continued to explain the possibilities of their actions, and left it at that. I could tell he was thinking over everything the rest of the weekend, but I was pleasantly surprised when he came to me Sunday night as I was washing dishes and said, “I’m going to break up with [18 year old girl] because I don’t want her to get in trouble.” Although I still don’t understand the ‘dating-breaking up’ concept used by today’s teenagers, I was proud of him for thinking of someone other than himself, and not letting his hormones rule his brain. Of course, seeing [18 year old girl] at school on Monday could change everything.

But, Monday evening, Corey came to me again and said that [18 year old girl]’s father agreed with me and that the two of them were going to ‘just be friends’. I’m not sure that the raging hormones won’t rule yet again, but for now, I am very proud of my 16 year old, and hope that he has become just a little more adept at interpreting social cues.

SHE Said

SHE said that her 18 year old daughter was 'retarded'.

SHE said that her daughter had just gotten a job as a shoe sorter, but SHE was worried that her daughter would steal the shoes.

SHE said that the family, minus the 'retarded' daughter, went out to dinner and her birth son said that they should never have adopted the daughter.

SHE asked if the group knew of a doctor who would sterilize her daughter.

SHE said her daughter was ruining her life.

SHE said if SHE knew then what SHE knows now, SHE would never have adopted her daughter.

SHE said all this during a meeting of an adoption support group meeting.

At the same meeting were new adoptive parents, parents still trying to find their way through the challenges faced with adopting older children. I thought it very insensitive that SHE didn't moderate her comments a little more. I was really uncomfortable during the entire meeting. I need to find a way to process all this and make a decision about my further participation in this group.

Pimp My Ride

I have been doing some research recently about the use "appropriate technology" or "appropriate technical assistance" versus providing technology or assistance based on traditional belief systems. I believe my interest in this grew from a time not too long ago when my school district was insisting that Ashley, my daughter who has deafblindness, use a picture based communication device. On the surface, it might seem like a good tool with which to train Ashley to communicate. She has just enough vision in one eye with which to see the pictures on the device, and if you turn the volume up to max, she might be able to make out a few of the device's spoken words. But, there were several problems.

First, for the device to speak loudly enough for Ashley to hear it, it would be most annoying to those around her. Secondly, she didn't want to use it. She has always prefered sign language to communicate. The school's argument was that very few people signed and the communication device would make it easier for Ashley to communicate with those people. Setting aside the fact that it is not my goal to make life more accomodating for people other than Ashley, Ashley is quite aware of the fact that not everyone can sign. And she adapts herself to those situations. For example, if she wants something she can't reach, and the person near her doesn't understand her sign language, Ashley will take the person's hand and lift it towards the item she wants. In all her 13 years, I've never seen anyone not understand that gesture.

I could list many other situations involving Ashley and other people with disabilities in which inappropriate technology was used. The result is never good. The article linked below, a story from the BBC News Channel, cites an example of the use of appropriate technology. I really believe it is time for providers (and this includes families) to take into account the preferences, the environmental, ethical, and economic concerns of people to whom technology and technical assistance is being provided.

Wheelchair for Africa