See What I'm Saying

The New York Times describes the movie as "Complex, candid and all-but essential viewing for hearing audiences, Hilari Scarl's intrepid debut feature, 'See What I'm Saying: The Deaf Entertainers Documentary,' educates without lecturing and engages without effort."

Check out the movie trailer:



Everything I've read about the trailer says that it just doesn't do justice to the movie. I explored a little more and found these Hulu interviews with the stars of the movie. The movie is playing selected theaters, and I sincerely hope that it will soon be playing in my city...

Breathe, Just Breathe

I felt like someone had punched me in the gut. It was one of those stop breathing moments - two seconds until telling myself to breathe again.

I knew when I adopted Ronnie that he had a lot of medical issues. Among those issues is kidney disease. He takes a handful of medications three times a day which supplement the job that his kidneys should be doing for his body. I had even heard from his foster mother that his last visit with the nephrologist in their town went well - that Ronnie was improving and probably would continue to improve.

Yet on Wednesday, the nephrologist here in my town - a highly respected and very experienced man - said that Ronnie was holding his own, but that medicine was not going to be a lifetime solution. He said that the future held dialysis and/or a kidney transplant.

Ronnie's world and mine took on a whole new dimension with those words. We've got to continue to work hard to keep him healthy, to do everything all the doctor's tell us, to be aggressive with treatment options, and through it all and most importantly, we've got to keep positive attitudes.

But I'm putting you all on notice right now, if my beautiful boy needs a kidney transplant, I will be asking each and every one of you to consider donating.

Special Exposure Wednesday

What better way to countdown the days to the release of the Iron Man 2 movie than in Slurpees in Iron Man 2 cups. The movie better get here soon or the boys will need a trip to the dentist!




Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Trying To Keep Dry

Ronnie needs an umbrella for his wheelchair. When we were waiting for the school bus last week when it was raining, he had a tough time staying dry. Both Chip and I had umbrellas - one we were holding over Ashley, and a really big one we were holding over Ronnie. But, his pants and shoes still got pretty wet.

So, I've begun my search for an umbrella and holder that can be attached to his wheelchair, but so far I'm not finding much.

I googled 'wheelchair umbrella', got lots of hits, and almost all of them were for this:



But this was a very specific warning that the product contained latex and was not appropriate for people with latex allergies (Ronnie). And, they weren't cheap. this particular model ranged from $30-$60.

So I tried another angle. I searched for 'golf bag umbrella holder', and found this:



It looks like it could hold any umbrella, and it looks pretty well made (at least in the picture). The lowest price I could find for it was $16.

I'm going to try to find a golf store in town and see if they have the holder. But I wondered if any of you had figured out the umbrella/wheelchair thing. If so, what was your solution?

Ronald, Meet Ronald

Saturday we all attended the 2010 Connections Resource Fair at our local Children's Museum. Connections is all about resources - healthcare resources, camps, therapy, intensive behavioral supports, assistance animals, insurance - you name it, and it was probably there.

Started several years ago as a small operation to link families of children with special needs to community resources, it has grown exponentially, and this year was the most well attended ever. So well attended, in fact, that I believe they may have to consider larger venues for future events.

Besides being a great place to learn about resources, it's also wonderful to see all the other families and children. It's almost like a huge support group meeting!

The highlights for us this year were talking to some folks about new video phone technology, Victory Game athletic events, Miracle League baseball, hearing dog programs, and our all-time favorite therapeutic horseback riding. And, we had a wonderful interpreter who stayed with us the whole time we were there! Here are a few pictures to give you a glimpse into the fun:



Ashley was fascinated by the horse's hooves...



And Ronald liked how strong the horse's muscles were.



'Milking' the fake cow was fun!



But nothing topped Ronald meeting Ronald!

Is There a Right Answer?

I'm curious to know how others feel about this.

Abbie Dorn always wanted children, and in June 2006 she got her wish -- triplets. But during a difficult birth she suffered severe brain damage that took away her chance to raise them.

Now, her parents and former husband are locked in a legal battle over whether Dorn is capable of interacting with her children, and whether they should visit her.

The full text of the article can be found here.

Should Abbie be able to visit with her children? Would it be too traumatic for them? If not now, when should they be allowed to visit? Do you feel her husband is being cruel, or are her parents being unrealistic?

Whatever else you may feel, I think we can all agree that what happened to Abbie during her delivery is very sad...

Doing Your Job

Last December, Jessica and I met with our state’s Department of Rehabilitative Services. That agency, DRS, is responsible for helping people with disabilities find employment. Of course, the person has to be found eligible first before DRS will assist.

Our first meeting didn’t go so well. The ‘counselor’ who scheduled our meeting seemed annoyed from the beginning of the meeting. I’m not sure why. Although the meeting was about Jessica, the counselor would only talk to Jessica through me. At one point, he claimed to have a difficult time understanding what she said. I told him that if he would look at her when she was talking, more than likely he would be able to understand her.

The counselor also gave us the impression that he didn’t feel Jessica was capable of being employed. He talked down to her (again through me) with statements like, “you know, you will have to get up to an alarm clock to get to your job on time.” And, “Do you think you can handle using public transportation?" These rude (in my opinion) questions were all posed before the gentleman even got to know Jessica.

The meeting ended when the counselor said he would contact Jessica’s school and our county’s agency that provides case management for people with intellectual disabilities. He told me he would let me know if Jessica was eligible for DRS’s help.

Like I said, that was in December. By March, I still had heard nothing. My calls to DRS went unanswered, and Jessica, now 19 years old, still had no plans for preparing for future employment. So, I contacted our state’s protection and advocacy organization. They agreed to represent Jessica and immediately began requesting records from DRS.

DRS said, “of course we found her eligible”, but of course, they hadn’t notified anyone. They were unable to produce records that showed she was eligible, and in fact could produce no records at all. So the attorney from the protection and advocacy agency and I met with DRS today – the original counselor and his supervisor.

The DRS folks were nice as could be today. They apologized. They made plans to do an employment situational assessment. They agreed to contact the school and the county case manager. In short, they agreed to do everything they should have done last December. I’m convinced that things changed because the attorney accompanied me to the meeting.

Why does it have to be this way? There have been way too many times that the only way I could get the attention of someone or some organization was to contact an attorney. The sole function of DRS is to help people with disabilities get jobs. Why did it take threatened legal action to make them do what they are tasked with doing?

Things really do not need to be this difficult.

Special Exposure Wednesday

Dear Ronnie, your life has been turned upside down so many times in your short 15 years. I promise you that it will not happen anymore! Love, Mama



Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Love Can't Always Conquer All

Last Monday I wrote about the child whose adoptive mother sent back to Russia. I tried to explain how everything being written and heard in the press might not really be 'everything.' Today I found an article in the New York Times that does a much better job of saying what I was trying to say:

In Some Adoptions, Love Doesn't Conquer All

Some of the most telling quotes in the article are:

“You can’t ever think you are getting a clean slate,” said Victoria Barrett, who lives in Tiverton, R.I., and adopted two children from orphanages in Siberia, a boy and a girl, now 8 and 7. “You can’t think that all you have to do is love the child and everything is going to be fine. It’s not like that. It takes specialized parenting.” And...

“Most of these parents are grossly, grossly ill-prepared,” said Ronald S. Federici, a developmental neuropsychologist. “Agencies saying they do all this training and support — that’s a bunch of junk. Some do, most don’t. A lot of families are uneducated at huge levels about the psychological trauma of being deprived and neglected, of under-socialized children who have had profound developmental failures.”

“I felt that I was a failure and that I condemned her to a life of hopelessness,” she said. “I knew I couldn’t help her, but I knew I didn’t want to throw her away. But sometimes as a parent you feel like you have a lot more power than you do. You say to yourself, ‘Can I make a difference in this child’s life?’ And if the answer is no, you need to walk away.” And...

“I don’t agree with what Torry Hansen did,” she said. “But I almost think there’s a certain little part of me that says, ‘You just saved yourselves nine years of torment.’ Knowing what I know now, I would have given up sooner because a lot of people got hurt.”

These quotes that I pulled out are the ones that spoke to me - a parent of a child like those described in the article. I didn't give up on my child, but I came close. Please read the article and try to understand how difficult these situations can be for families - not just the parents, not just the children - the families.

I predict...

that in a few short years, the girls will be lining up to ask Ronnie to the prom. I left the music playing on this video so you can see how well he keeps to the beat even though he can't hear a thing! He is following the cartoon person on the video.

Watch Ronnie Dance!

(The video was not rendering well on my blog. The link will take you to the Youtube site.)

Liquid Strength

Tears of joy.

I wanted to be strong and persuasive. I wanted to stand tall, surrounded by my children, convincing all present that I was indeed the best choice.

I wanted my skills, my achievements, my committment and dedication to shine forth.

But all that came were tears of joy - as always happens when I talk about my children and how blessed I feel.

Then the judge cried with me and a new family was born.

Perhaps my strength has always been in those tears.

A Blessing That Multiplies Each Day

Today's IEP meeting was quite the event. While I am not comfortable sharing all the details right now (but believe me, I will have TONS to share in about 5 months!), there was one really bright spot that I can tell you about.

My school district has started a new push to get students to play an active role in their own IEP meetings. This was my first time to experience this. The IEP meetings for my other three children receiving special education services have not been held yet, and I am anxious to see what those meetings hold. But today's meeting began with Ronnie telling us about himself.

Ronnie created a PowerPoint presentation that he shared with everyone at the IEP meeting. He chose the pictures he wanted to use. He typed the sentences of information he wished to share. And while the presentation was being shown, he signed what he had written.

It was a creative, intelligently done presentation, and to say that I am proud of Ronnie is an understatement. Ronnie is such a bright and special child, and I can't imagine what I have done to deserve the blessings that he brings to me and the rest of our family.

Special Exposure Wednesday

My friends and children make fun of me for lining up the breakfast dishes the night before. But you know what? My mornings run pretty smoothly and most importantly, on time :)



Make sure to visit all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Hoop Dreams

The weather this past weekend was lovely - not too hot, not too cool. The lure of the basketball hoop in the back yard was not to be denied!

Child Sent Back To Russia

I’m sure most of you have heard the news story this weekend about the adoptive mother who put her 7 year old son on a plane and sent him back to Russia. Both the United States and Russia are in an uproar over the event, and Russia may even suspend any future adoptions by the US. The adoptive mom said a lawyer she met via the Internet told her she should send her son back.

According to the mom, the child was very violent and she was scared of him. She said he attacked her several times, and that she caught him trying to start a fire in his bedroom. While these accounts may sound far-fetched to most, I understand exactly what was happening. I believe the boy suffered from Reactive Attachment Disorder.

My daughter, Jessica, is diagnosed with Reactive Attachment Disorder. The story told by the mother of the young boy sounds eerily familiar.

I have had several friends who either wanted to or actually did adopt children from Russia. The children were all in orphanages. My friends believed that all the children available in the US had serious emotional issues. The believed that they could get a young child from Russia, a young child of their dreams. Unfortunately, my friends have realized that the children from Russian orphanages have not escaped emotional upheaval either.

Reactive Attachment Disorder is in my opinion one of the most difficult issues a family can face. Like the boy in the story, people outside the family may not see the issues. RAD children are very good at covering up and presenting a charming face to people outside the family. But for the family, rage, aggression, injury, false accusations, killing animals, starting fires, etc. are a daily occurrence.

I in no way condone what the mother did. But I do know that the young boy needs some immediate and serious help. I hope he gets that before another unsuspecting family ‘rescues’ him. The mother and the rest of the family also need immediate and serious help. If anyone is at fault in this situation it is the ‘system’.

Potential adoptive parents need to be brutally educated. They have to know how damaged many of the children in our foster care system and in the institutions of other countries can be. It doesn’t mean these children should not be adopted. Rather when they are adopted, everyone in the family needs constant support.

Jessica is proof that a child diagnosed with RAD can mature and lead a good life. But, the issues are always there. Jessica has learned to recognize times of difficulty and to ask for help. Those around her have also learned to diffuse potential triggers for her negative behaviors. I’m proud of her for all she has and is accomplishing, but she could not have done it without intensive supports from the very beginning of her time with us.

I just hope that people who do not know about Reactive Attachment Disorder will not judge either the child or the mother. Just understand that desperate people do desperate things. We, as a society, need to offer assistance before the desperate acts happen.

Connected

Today has been quite exciting around my house. Ronnie got his video phone installed, and he hasn't stopped smiling!



The only problem is that he doesn't have the phone numbers for his friends, his siblings and his most recent foster family. I am trying very hard to find those - they should all be in the foster family's phone directory - but unfortunately, the foster family is out of town on vacation.

So until we get those numbers, he is calling regular voice lines and keeping the relay interpreters busy. I wonder how long it will be until the call me and ask me to take away his phone privileges :)

If any of you would like to talk via videophone to Ronnie, just let me know!!

Truth and Horror

Today I am going to give you a link to an investigative report about a woman who was injured in the institution in which she lives. It's difficult to read, and you will want to stop after just a few pages. But, it is worth your time.

It's so easy for all of us to forget, or maybe not even know in the first place, that the things described in the report are real. And to know that it happens just around the corner from our daily go-to-work, love our families, pretty good by comparison lives makes it all the worse.

I could particularly visualize the woman in the report that was injured. She could have been my Ashley when she was younger. The way they described her was similar to the way Ashley was before she received the supports to become the intelligent, vibrant child she is today.

The contents of the report sickened me - they made me cry - and they made me want to bring home the woman that was wronged. But, I'm glad I read it, and I am very glad that there are organizations like my state's protection and advocacy agency to stand up for people like the woman in the report.

SEVTC Investigative Report

Special Exposure Wednesday

Spring is definitely upon us here in Virginia - and so is the pollen.

Here is a picture of one of my beautiful azalea plants with a bloom just ready to burst open. But see all those little yellow spots on it? That's pollen. For the next month or so, our world will be yellow and our sinuses will be infected!



Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Refreshable Braille Display

Anyone that has been reading my blog for a while knows how I feel about devices such as the Kindle reader and the lack of accessible features. The Kindle is making progress but it's not there yet. So, I was really interested to learn more about the accessibility features of Apple's new iPad.

So far, I haven't found much information - perhaps because the device is so new. But I did find one article that discussed future possiblities for the iPad and other such devices. From the Smart Planet website:

Refreshable Braille display could change how the blind read

Scientists at North Carolina State University have developed a refreshable Braille display system that would allow the blind to read digital content on the Web.

The Braille system, of course, allows the blind to read by using a series of raised dots to represent letters and numbers.

The problem with existing electronic Braille displays is that the expensive devices generally only show one line of text per time.

But a research team led by Neil Di Spigna and Peichun Yang wanted to create a full-page display that effectively “maps pixels in an image,” allowing the full-page Braille display to represent the images as raised dots.

The researchers call the concept a “hydraulic and latching mechanism,” which is made of an inexpensive, resilient electroactive polymer that allows the dots to be raised to the correct height for reading.

Once the dots are raised, the latching mechanism supports the weight being applied by a person’s fingers as they read the dots.

The material’s quick response rate allows a reader to quickly scroll through a document.

The researchers said they are working on a fully functioning prototype, with next year as a target.

If successful, the blind will be able to take better advantage of the myriad gadgets — laptops, smartphones, GPS navigation devices, e-book readers, even the Apple iPad — that access the Web.

No Dragon Training For Us

My boys asked me to take them to a movie this weekend. The movie they suggested was How To Train Your Dragon, and I was just pleased that it wasn't a violent or otherwise objectionable movie.

Imagine my surprise when I found out that NONE of the movie theatres in my city have closed captioning or any other type of accommodation for people who are deaf. Really - we called every single one. It wasn't that they just didn't have it for the movie we wanted to see - every one of them said their theaters have no such technology.

I don't live in a small town. I live in the capitol of my state - a medium sized city with lots of movie theaters. I know there are a lot of deaf people that live in this city because we go to silent lunches and dinners with them. I've never asked those people about movies because I naively assumed there would be accommodations, but you can bet I will ask at the next lunch or dinner we attend.

Really, is this legal? Can anyone enlighten me?

"My Deaf Family"

I'm a fan of all the TLC family shows like Little People Big World, 19 Kids and Counting, and Table for Twelve. I just watched a video done by Marlee Matlin for a show similar to those. So far she hasn't found a network willing to pick up the show, but watch this 10 minute video from YouTube and tell me if you would like to see this pilot become a regular show:

Teenagers!

Teenagers are such complex creatures, aren't they? Most of the time I can almost figure out what is going on in their minds and their reasons for the things they do. But every so often, they throw me for a loop. Ronnie, with us for just a week now, has already done that. And Ashley, well we all know what a smart little thing she is. But she still never ceases to amaze me.

Here are some observations from this week...

Ronnie

I noticed a couple of days ago that when Ronnie was getting dressed for school, he kept his pajamas on under his clothes. He actually went to school that way a couple of days. I asked him why he was doing it, and he just shrugged and didn’t seem to want to share an answer. This morning I told him that it was going to be a very warm day, and that wearing his pj’s probably wasn’t a good idea. He didn’t wear them today, but I am still really puzzled why he wanted to.

Does anyone have any ideas why he might want to wear his pajamas all day under his clothes???

Ashley

Ashley has tendency to get up several times each night. Actually, it’s a good night if she only gets up twice. Because she is blind, I worry about her wandering around the house at night and perhaps getting hurt. So, for many years I have put a baby gate at her bedroom door. However, even though I have put it up, for the last 3-4 years, she has been quite adept at taking it down. The noise was enough to alert me to get up and steer her back to bed before she started wandering.

But just before Ronnie joined us, I decided to have a dutch door installed at her bedroom. I thought that I could leave the top part open at night so I could still hear her, but the bottom part could be closed and locked so she wouldn’t wander. Seemed like a good idea – at least until she figured out how to unlock the door.

Last night, or early this morning actually, I was sound asleep. She walked into my room and turned on the overhead light, smiling all the while. So much for the lock….

What interesting things have you observed about your children this week?