Shame on Dr. Phil

Most of my readers already know how I feel about pity. Not much angers me more than people who feel sorry for my children, or anyone for that matter, with disabilities. However, there is one aspect of pity that does anger me more - when people pity me or other parents BECAUSE we have children with disabilities. And Dr. Phil McGraw of the Dr. Phil show is someone who does that frequently.

Several years back, Dr. Phil did a show about a family with three children who are deafblind. The entire focus of the show was about how difficult the girls' lives were and what saints the parents were. Now Dr. Phil has gone and done it again.

On April 13th of this year, his show titled "Deadly Consequences' aired. That particular show presented the idea that parents should be able to euthanize their children who have intellectual disabilities. Here's a short synopsis of the show:

The show centered on Annette Corriveau, who has two adult children who have a progressive genetic condition called Sanfilippo syndrome. The show opened with a brief introduction of Corriveau, followed by an interview of her conducted by one of the producers. Over the course of the opening which took more than half of the segment, viewers were shown and/or told the following:

•Video of Corriveau's two children from typical childhood to recent pictures as adults with disabilities;
•Depiction of intellectual and physical disabilities developed as a result of the condition;
•Discussion of the changes in their appearance as they got older, implying that their “not normal” appearance is tragic;
•The fact that Corriveau institutionalized both children when they were young.
•Video of one of Corriveau’s visits: she reported visiting them every two months, but doesn't touch them, because they don't react to her.

The second guest in the segment was attorney Geoffrey Fieger, who defended Jack Kevorkian, the assisted suicide and euthanasia advocate who claimed to have assisted the deaths of about 130 people. According to the New England Journal of Medicine, over two-thirds of Kevorkian’s victims were people with disabilities who were not terminally ill. During this recent segment, Fieger argued that a health care guardian’s right to consent to or refuse medical treatment should be extended to include active euthanasia such as a lethal injection. He asserted that what Corriveau wants is perfectly reasonable and merciful and that existing law against this is stupid.

On May29th, thirty disability rights organizations, led by Not Dead Yet, issued a letter to Dr. Phil criticizing the April 13th segment. A portion of that letter is shown below:

"This program was a horrific assault on people with intellectual and developmental disabilities. By conveying social acceptance and approval of active euthanasia of individuals with disabilities by their family members, the segment threatens their very lives. People with disabilities are reportedly twice as likely to be abused as their nondisabled peers. It is grossly irresponsible that the Dr. Phil Show aired a segment that further promotes any form of violence against a group already subject to discrimination, ridicule and gross devaluation. The idea that people with disabilities are “better off dead” is deeply offensive and cannot be tolerated."


The organizations supporting the letter have called for a public apology for the “Deadly Consequences” segment and for equal time to to be given to individuals with intellectual disabilities and organizations advocating their equal rights.

What are your thoughts? Is that enough? Do you think Dr. Phil will respond? I'm thinking not...

Special Exposure Wednesday

I'm still having a very hard time convincing Ronnie he is capable of more - capable of independence - capable of achieving a life of normalcy despite being in a wheelchair. Talking to him about it doesn't seem to work, so I decided to have him do some things he probably had never thought of doing. Maybe if I can string enough of those things together, he will finally understand that he won't need someone to take care of him for the rest of his life.

This past weekend, he worked on sweeping off our basketball court and watering our plants. Sometimes he has to figure out new ways of doing things, but so far he always has.

He's got a ways to go to find that belief in himself, but I know he will get there!

A Really Hot Weekend

The heat this past weekend was brutal, and our dog, Cooper, is a good indication of that. Being only 6 months old, he is usually a bundle of energy, but this weekend found him lying down a lot and sipping water from the squishy ball he has in his mouth. Sort of like me, just without the ball!

Memorial Day

It's easy to think of Memorial Day as simply an extra day off work, a three-day weekend. But the day is meant to honor the men and women of the Armed Forces who gave their lives in the service of their country. Just saying "Thank you" seems so inadequate, but I will say it anyway.

It Happened Again

Back in 2009, I wrote a post about a phone call I received from a Navy recruiter. This recruiter wanted to talk to my daughter, Jessica about her plans for when she exited school. It was obvious while I was talking to him that his purpose was to recruit her for the Navy.

Well, it's happened again. This time it was an Army recruiter calling for my son, Ronnie.

My son, Chip had answered the phone and again, the recruiter starts his speech and makes it difficult to get a word in edgewise. But finally, the recruiter took a breath, and Chip started talking. He described Ronnie's deafness and spina bifida, but said he was a great kid and would be a real asset to the Army. The recruiter got very quiet, and then apologized for calling.

Perhaps the recruiters just get lists of students from the high schools. Perhaps the recruiter knew that I had another son who had joined the Army after high school. But however the information was received, can't the recruiters be a little more sensitive before making these phone calls? Couldn't they ask the schools to mark any students that should not be considered candidates for the service? I am the last person to want to apply labels to people, but in this case I think the label would be better than forcing a family to accept yet again failed dreams they may have had for their child.

Special Exposure Wednesday

This is my clematis plant when it was blooming...

And this is after the bloom fell off. It's absolutely gorgeous at both stages!

Thanks for the great pictures, Chip!

Older and Better

I find that I am becoming more of a homebody than ever. I never want to leave the house, even on the weekends. I do leave, of course, because things like groceries don't deliver themselves and because my kids need to be out in the community. But I am just so freaking tired of all the stares from people.

I don't know if people are staring more than usual, or if I am just more sensitive, or if as I get older I get less tolerant, but I do know that I just don't want to deal with it.

We had some errands to run this past Saturday - the sporting goods store to get lacrosse gear for Ronnie, the pet store to get Cooper a new toy - and then we had lunch at a local deli, a deli frequented by families. I lost count of the number of people who would just stop and stare as we went by. I don't mean just a sideways glance, but just a full stop and stare.

I live in an area of town that is a tad more affluent than some of the inner city areas. Others who live in this area are seemingly intelligent, well-heeled folks (based on their jobs, their clothes and their vehicles). But I swear, polite, positive behavior does not seem to come with education, money and big houses.

Parents stare, their children stare and are never corrected for it, shop people stare, waiters and waitresses stare, even police officers sometimes stare. But you know who almost never stares at my unique family - elderly people. Why is that? Do people just mellow as they get older? Have they seen so much in their lives that a beautiful young girl with only one eye and a handsome young man who uses a wheelchair and talks with his hands are nothing out of the ordinary for them? Or have they just learned tolerance and acceptance as they have aged?

I would like to know their magic formula, and then I would like to sprinkle that over the rest of 'humanity' (and I use that term loosely....).

Yum Yum

You know what I love most about Chip being out of college for the summer? The wonderful food he makes for us!

Sunday was cold seafood salad over lettuce leaves from our garden, cheddar/Old Bay biscuits, and banana cream pie milkshakes. YUMMM!

A Story for Ronnie - The Deaf Hulk

Heroes in my Eyes

I attended a support group meeting yesterday afternoon. The meeting attendees were all parents of adopted children, and over lunch we talked about challenges and suggestions and understanding. These meetings are only held every other month, but I get the distinct impression that everyone has been impatiently, if not desperately, waiting for the next meeting.

Although I am an exception, the adoptive parents all have children with very significant behavior and emotional issues. Most were adopted from the foster care system, and most of the children have had multiple foster home placements. Some even have had multiple (failed) adoption placements. I got the impression that for most of the children described, this was their final chance at a family.

The parents described aggressive behaviors - putting holes in walls, kicking in TV screens, throwing and breaking everything within reach, and/or physically injuring themselves, their parents, their siblings, and even strangers sometimes. The children curse with abandon, run away regularly, and constantly push every boundary their exhausted parents attempt to enforce. These kids sit in counseling sessions and refuse to speak. They are promiscuous - they start fires - they steal and lie - they hurt animals. In other words, they are very, very damaged human beings.

Yet at the meeting was a roomful of parents still committed to helping these children. The parents were tired and scared, at their wits end, and wondering if truly the could continue to parent these children. But they do continue. I've seen them at every meeting for years. For most of them, their lives get much harder before they get better, and in some cases, they never get better. Yet they still stand by and hope for healing for their children.

These parents, the ones you seldom see because they cannot take part in community events, school programs, or church services, the ones whose lives revolve around keeping people safe and unharmed, the ones who continue to try when others of us would throw up our hands and give up, these parents are heroes. I have no idea where they find the strength and the fortitude to go on, but with so many damaged children in the *system*, I am so grateful that they do.

So, the next time you see a parent who is struggling with a child like I have described, don't be so quick to judge. Don't try to lay blame on the parents. Do thank them, smile at them, and maybe even give them a pat on the back. You really have absolutely no idea what their lives are like, and I'm betting most of you don't ever want to trade places with them.

Special Exposure Wednesday

Ronnie is now playing wheelchair lacrosse. I don't know much about the game except for the fact that it is ok to hit other players with your stick. Exactly what a mother needs to watch...

Prom

It's prom season, and I'm feeling a little sad about that. In just one year, Ashley will be of age and in the correct school grade to attend prom. But unless things change, she probably won't be going.

Ashley's school is very nice. The teachers and staff do their best to make every student, regardless of their level of ability, feel welcome and part of the student body. There is a group called Circle of Friends that brings together regular education students and special education students for many activities and events. I would probably classify this particular school as the most inclusive school in our county, a county which does not yet fully embrace the concept of inclusion. But what about prom?

The high school prom to me is akin to a young lady's coming out party or the Quinceanera of the young Latino girl. It's a time to finally dress up in a fancy dress, put on makeup and have one's hair done. Yes, I know a lot of much younger girls are doing those things long before their late teens today, but for Ashley the prom would be the first for those things.

I also remember it as a time for a first real date (yes, girls do that earlier today also). A date where a young man in a tuxedo picks the girl up in a car, either driven by the date or the date's parents. There were flowers for the wrist, and pictures taken by both parents. It's a time for memories, memories which will stay with the couple (or at least the girl) for a lifetime.

I already know that Ashley will not be asked to the prom. Yes, her teachers and I may be able to 'arrange' something, but that's not what I want for her. I want a real date with a handsome young man who truly wants to accompany Ashley to the dance. Or, I want someone special, someone who will make everyone else sit up and take notice, to agree to go to the dance with Ashley.

Remember when the young military woman asked Justin Timberlake to go to the Marine Corps Ball with her? That's what I want if there is not a student who wants to take Ashley to the prom. I don't know what famous young man I would want, or even how to contact someone, but I really wish I could make it so very special for Ashley.

Does anyone have any suggestions? Ashley likes sports - baseball and basketball - and she likes computers (Mark Zuckerberg??). But in reality, even if I could contact someone, the person would have to have a real heart for people with disabilities. I wouldn't want the famous person to agree just to get more publicity for themselves. Ummm, what are your suggestions? Tim Teebow? Justin Verlander? Maybe the DJ from the Ellen Show? Give me ideas.....

I enjoyed another great Mother's Day on Sunday! Actually, the entire weekend was great!

On Saturday the kids and I went fake shopping. That's where we go and try on things that we have no intention of buying. This time we went to Target. Ashley was resplendent in hats, scarves and sunglasses. Ronnie was every bit the ferocious avenger!

On Sunday, I got phone calls from Jessica and Corey, and Ronnie, Chip and Ashley took me to a baseball game. Our team won and I ate a corn dog! Life is good!

No Mother's Day

Brilliant

Special Exposure Wednesday

Little Cooper is growing up....and is such a handsome fellow!

Weaning

Last summer, while Ashley was not in school, I was determined to try and reduce/eliminate some of the medications she took. I just felt like she was reaching a point where the side effects of the medications were worse than the actual condition they were supposed to be treating. That is especially true with seizure meds.

At the beginning of the summer, Ashley was taking Depakene, Keppra, and Trileptal for seizures. She also was taking Clonidine to help her get to sleep at night, Risperdal because many, many years ago before she learned to sign well she would communicate through behavior and Risperdal is a behavior med, and Straterra for ADHD symptoms. She also was taking a low dose birth control pill to regulate her hormones because we would see more seizures with hormone fluctuations.

So I targeted the two meds with the worse side effects – Keppra and Risperdal. Through a very, very slow weaning process that consumed the entire summer, I was able to successfully eliminate both medications without any adverse effects to Ashley. Her seizures did not increase nor change in intensity, and her entire mood improved once the Risperdal was out of her system.

Now I’m wondering if I should try again with some of her other meds this summer.

Ashley still does have seizures, but very, very infrequently. Unless she is sick or getting sick (she does have a lot of ear infections), we see no seizures. In fact, a seizure is sometimes the first indication that she has an ear infection. I’m wondering if I should try to maybe not eliminate the Depakene but reduce the amount she takes.

Depakene can have a negative impact on one’s liver. Ashley started life with a liver deficit because her birth mother was an alcoholic. While on Depakene, Ashley does get frequent blood work done to monitor the status of her liver. I would like to think that I could lessen the impact to her liver if the dose of Depakene she took was smaller.

She has also been on Clonidine for a long, long time. While I haven’t noticed any side effects to that medication, I would still like to reduce the amount of meds she is taking, especially if she doesn’t really need it any longer. Sleep has never been one of Ashley’s well-honed skills, but I have noticed in the last couple of years that she is adjusting to the routine of sleep. Now instead of getting up 4-5 times a night, there are only 2-3 nights a week that she gets up at all, and then it is usually just one time. So maybe her body has finally accepted the wake/sleep cycle.

I think I may start with the Depakene. Instead of 10ml three times a day, I’ll go very slowly and try to get her to 5 ml three times a day by the end of the summer. And instead of 2 Clonidine at bedtime, I’ll try reducing to one and then if that goes well, to none by the end of the summer.

I always want her to have any medication that she truly needs, and figuring out exactly what she needs can sometimes be difficult. But building upon our success last summer, I hope that if things go well this summer, her liver will be in better shape and maybe the veil or fog of consciousness will dissipate a little more.

Such a Waste of Time

Why did Ronnie's school team feel like a hearing test was necessary? Any one of the team members could have stood behind him, yelled at the top of their lungs for 5 minutes, and he would never have turned around or heard a thing. Yet, because it was time for his triennial evaluation, and hearing tests are part of that, he had to sit through an audiological exam at the school.

The note that came home that afternoon said that there were 'no surprises.' Really? Did you think he had been faking all this time, or that somehow overnight a miracle had occurred and his hearing was restored?

What kind of message are we sending to students like Ronnie we they are forced to sit through tests like that when the outcome is obvious? I'm betting that he is getting the message that still something is wrong with him, less than ideal, less than what the school would hope. Why else would they continue to test if not out of a hope that somehow he gets 'better'?

And how much taxpayer money is being wasted on fruitless pursuits such as this?

You can probably tell things are not going well with his current school placement. Thankfully he will return to his home school next year, and I firmly believe things will be better.

Teacher?

I admit it - I am a reality show addict. My favorites are Dancing With the Stars, So You Think You Can Dance, Amazing Race and Survivor. In fact, I have seen every season of Survivor since its inception. But one of the players in this season's show has really rubbed me the wrong way (and that's putting it mildly).

Alicia Rose, a 25 year old special education teacher from Chicago, made the following statement about another player during last week's show:

"Christina's IQ is probably a zero … I don't know if that even exists. I mean, I'm a special ed teacher, so uh, I handle Christina as one of my students. And she's gonna do whatever we tell her to do."

Really nice, eh? Wouldn't you want Alicia teaching her children with disabilities? And is her school district really going to let her come back to her job after the show?

Personally, I think Alicia Rosa better win that Survivor million bucks, because to me her current career path doesn't exactly have the brightest of futures.

Special Exposure Wednesday

We've had a pretty rainy Spring so far. My garden is loving it - Ashley, not so much...

Any Direction You Choose

Congratulations!
Today is your day.
You’re off to Great Places!
You’re off and away!

You have brains in your head.
You have feet in your shoes.
You can steer yourself
any direction you choose.

Dr. Seus

I’m so happy that Ronnie has access to team wheelchair sports through Sportable. He is a very athletic person, and always seems so excited to play basketball, lacrosse, track and field, etc. He never had that opportunity before joining our family, and he certainly doesn’t get it at school. But even more than the athletic opportunity, I like that he is meeting people who use wheelchairs and don’t let that stand in the way of living life to its fullest.

Last week at lacrosse, the coach was talking about one of the players to Ronnie. The player is a man in his late 20’s, and it was obvious that sports are his passion. But the coach was also relating how this gentleman was late arriving because he was repairing his roof. Ronnie looked a little surprised at that, and the coach just said, “well, he’s a family man and he has to take care of his family.” I saw a light bulb go off in Ronnie’s brain.

Ronnie has met people who drive and unload their own chairs, people who have children and who care for those children, people who travel to exotic places, people who have many different types of jobs, and people who can be every bit as competitive on the playing field as a person without a chair.

Ronnie is on that threshold on which all people with disabilities stand, even if only for a moment. Ronnie can choose to have others help him the rest of his life, or he can decide to take care of himself and do whatever it takes to reach that goal. He is more than capable, but I think he often needs convincing. Somewhere along the way in his tumultuous life, he learned to be a taker and not a giver. I believe it is my parenting job to change that, and the folks at Sportable are helping me more than they realize!