It Is Indeed Sherific!

Most days I don’t think about all that is involved in caring for my children with significant disabilities. I just do what needs to be done. Most days, everything gets done that should get done, and then we move on to the next day. But if it doesn’t all get done, I can get pretty stressed and feel like a not-so-good mother.

But I read something this week from Sheri, one of my favorite bloggers which helped me understand my feelings a little better.

On her blog, Ain’t That Sherific, Sheri was asked some questions from a new mother of a child with FAS (Fetal Alcohol Syndrome), and during the course of answering those questions, Sheri, also an adoptive mother, realized that as parents we are just as traumatized as our children with significant needs have been traumatized. It doesn’t matter that we weren’t around when the trauma was occurring. It moved into the family the same day our children did.

Intellectually I realize that, but I know that emotionally I have not accepted it.

One of the final paragraphs in Sheri’s post really hit home with me. She wrote, “We can advocate for our kids. We can fight for services. We can beg and plead for help. When it comes down to it, we are left alone to deal with the aftermath of the trauma they suffered as children. We can make it better, but it will never ever go away. My child's brain damage caused by alcohol in utero will not repair itself. We have to cut them some slack. Why shouldn't we cut ourselves the same slack?”

She’s right – we parents do need to cut ourselves slack. We need to realize that we do the absolute best we can, and we usually do it better than anyone else ever could. And even if we don’t, we keep trying.

Sheri, you have been an inspiration to me since I first ‘met’ you, and you continue today. Thank you for helping me see what is right in front of me.

Special Exposure Wednesday

Ronnie's new basketball wheelchair is fast and responsive. Wheelchair basketball is not a calm sport. Those things equal lots of spills - spills which make my heart skip a beat. The coaches tell me to relax, but it's difficult. So, to hopefully make things a little easier for both Ronnie and me, his physical therapist agreed to let him practice righting himself and his chair after a spill. It's something he had mastered in his street chair, but he needed to learn new skills for this very different chair. Here he is...practicing....



And yes, this second picture is oriented correctly. He is practicing falling forward...

Sweet Sixteen

The doctors thought you would never live to see your third birthday. The social workers thought you should be sent to an institution. Your foster mother just knew she was sending you to our home to die.

They were all so very wrong.

You’ve grown into a beautiful young woman. You are so full of life and love that I can’t in my wildest imagination see you any other way. You are a daredevil, a free spirit that refuses to submit to society’s limits. Your heart sees beauty in nature, and your fingers translate that beauty into works of art.

You live with abandon. You love with intensity, and you have proven to the world that disabilities are a mere annoyance, not a hindrance to a full life.

You are strong and willful, opinionated and argumentative. You know what you want and you refuse to let anything stand in your way. You won’t be put in a box or labeled or categorized. Your life is your own, and you are willing to let the world know that.

You are my beautiful daughter – my heart – and one of the five reasons that my every day is glorious and wonderful. You challenge me, but I love that. You inspire me and make me want to be the best mother I can be. You have never been an ‘easy’ child to raise, but loving you wholly and completely is the easiest thing I have ever done.

My beautiful Ashley – my Sweet 16 – Happy Birthday from the most blessed mother in the world!!

I love you,

Mama

RAMS!!!!

I'm an underdog person - the kind of person who will stand up for the one that others denigrate or make fun of. I've always been that way, and it is probably one of the reasons that I am relentless when it comes to advocating for my children.

Sunday afternoon, another underdog proved to the world that they should not be underestimated, and it was glorious to watch!!

VCU (Virginia Commonwealth University, the college my son attends) beat the University of Kansas to move to the Final Four in the NCAA Tournament!!!

To say my city, Richmond, is celebrating tonight is an understatement.

Let's go, Rams!!!

Gotcha!

This week we celebrated Ronnie's Gotcha Day. Exactly a year ago, my handsome son came home to his new Mom and his brothers and sisters.

It's been a year of surgeries and health issues - first girlfriends and joining a sports team for the first time. It's been a year of learning to trust and believe, a year of accepting that many people love you.

Through the year, Ronnie has dealt with his feelings of loss, his fear of the new and unknown, his insecurities and his apprehension about whether this truly will be his forever home.

I hope he's starting to believe that he really is home, that I will always be here for him, and that he is my son - wholly and completely.

All our lives changed a year ago, yet it seems like this was always the way our lives should be. He was my son before we ever met, and I will always be his mom. Whether the word is destiny or fate or a word involving divine intervention, I believe our lives were pre-ordained to be together, and I am so very thankful that we are.

Happy Gotcha Day, dear Ronnie, and always know that I love you - always have, always will.

Noticed!

I'm very excited! My other blog, www.ustooplease.com, has been noticed by one of my town's local TV news station, and I have been asked to be a regular contributor to their community news section!

Of course, there is no compensation involved other than seeing my name as a byline, but still it's very exciting.

Here's my first article (which was also posted on www.ustooplease.com):

Virginia Museum of Fine Arts - Accessibility Review

Special Exposure Wednesday

My little peach tree exploded with blooms this week! The fuzzy baby peaches won't be far behind!

When I Needed Help - Where Were You?

According to the Community Emergency Preparedness Information Network, “an increasing number of fire department’s have been trying to include the deaf, hard of hearing and deaf/blind communities in their fire prevention and safety plans. Many have applied for 2010 Fire Prevention and Safety Grants through FEMA. This will ensure that accessible smoke alarms are distributed to those that need them.

Tragically, there continue to be fire fatalities involving these underserved populations. Accessible smoke alarms will curb this trend, but these devices are very costly when purchased individually and they are only part of the solution.

Education and training programs continue to be a highly effective way to provide fire prevention and safety information to these individuals, but few fire education professionals know how to provide a truly accessible program.”

My experience in trying to figure out what type of smoke alarm to buy for my son who is Deaf is a perfect example of that lack of knowledge.

Several months ago, I emailed the fire department for my county. I asked for guidance on smoke alarms for the Deaf. Months passed and I got no response.

By surfing the Internet, I realized that a smoke alarm for someone who is Deaf is drastically different than a traditional smoke alarm, but I was still confused as to what to purchase. I knew I needed something with a strobe light, and something that could also offer vibration, to a bed for example, would be ideal. But, there is no one device that can do that. It appeared I needed to buy at least two things to accomplish my goals. Since those two things were quite expensive, I wanted to make sure I was ordering correctly. Thus, my email to my fire department.

Fortunately, the father of one of Ronnie’s wheelchair basketball teammates is a fire captain in an adjoining county. He used his influence and his contacts to get my county fire department to finally contact me with the information I needed. But it shouldn’t have worked that way.

What if another family or another Deaf person didn't have the contacts that I had? How would they get the information and support they needed?

So, the Community Emergency Preparedness Information Network is correct – few fire education professionals know how to provide a truly accessible program, and at least in my county, the fire department was not even responsive to a disability issue.

Very disappointing….

Discerning

I know that it is often very difficult for our kids with severe disabilities to express their emotions in the usual ways. As parents, we learn to read their feelings. Even when they are infants, we learn the sound of a hungry cry versus a tired cry.

When our children are older, we can usually tell without their ever saying a word if they are angry or frustrated or happy. I'm not sure though that we can always figure out some of the more subtle feelings, being lonely, for example, or being worried about something.

I also wonder if our children with severe disabilities can read the emotions of other people. I believe they can even if they can't always put words to what they sense.

For example, I know that Ashley can tell when I am worried. I know she can tell when I feel bad but try to hide it. She can tell when I am sad or extremely stressed, and more often than not, her emotions will begin to match mine. That makes sense as it relates to the mother/child relationship.

But how about with the other people in their lives? Can our children tell if someone is truly being nice to them, or being nice to their face and making fun of them later? Can they distinguish the subtle emotions of others? If someone tells them that they love them, but as a parent, you know otherwise just from the other actions or words of that person, do you think our children can read that? Do our children understand pity, envy, and yes, even lies?

What do you think? Even if your children can't give voice to their emotions and the emotions of others, do you think they understand? I'm leaning towards an answer of 'YES'.

Somebody's Smiling!

Ronnie got a big surprise when he got home from school yesterday - his very own basketball wheelchair! He had been borrowing an old one from the organization that sponsors the wheelchair basketball team (Sportable), but as of today, he won't have to borrow one any longer.

I think he's just a little bit happy!!

Chip got it all put together for him before the bus arrived, including the big red bow!



Then we made him close his eyes while we brought it out of hiding...



And there's the smile!!!



He then had the chance to try it out at basketball practice! (That's his volunteer interpreter standing.)



He's very happy - especially with how fast it can go :)



Way to go, my handsome son, way to go!!!!

Picasso Face

Wednesday was a teacher workday for my school district, and I had to stay home with the kids. So, we decided to go and look at pictures of nude women with large breasts.

Wait - - - Don't call Child Protective Services. We just went to the Virginia Museum of Fine Arts to see the Picasso Exhibit!

The Virginia Museum of Fine Arts is the only East Coast venue for the exhibition’s seven-city international tour. And we couldn't miss it! It was as magnificent as I imagined.

And here's something really interesting. Some of you may remember when I posted back in 2007 about an author named Jonathan Mooney. Mr. Mooney put out a call for stories - I submitted Ashley's - and he chose that story to be one of the 13 chapters in his book titled, Short Bus Stories.

In Ashley's chapter of the book, Mr. Mooney referred to Ashley's 'Picasso face'. I wasn't sure exactly how he meant that, but I interpreted it to mean she was a work of art. Today, I figured out what he meant.

Many of the subjects in Picasso's art and sculptures have eyes that look very different. It is always the left eye that is drastically different than the right. Here is an example:



Now look at my Ashley:



So there you have it! I have my very own Picasso work of art! How cool is that!

Special Exposure Wednesday

Therapy day....

Ready Yet?

(picture courtesy of AFP/Getty Images)

When the tragedy of September 11th occurred, I immediately started thinking about disaster planning for my family. When Hurricane Katrina struck, I again started thinking about disaster planning. Today, after the events in Japan, I am still thinking and still not doing.

I’ve asked myself what would I do if the disaster struck while my children and I were separated – me at work, them at school for instance. How would the schools handle things, and how would I get reunited with my children?

I remember on September 11th that I felt compelled to leave work, and rush to the sides of my children. I knew I would just feel better if they were all with me, not spread around three different school buildings. A similar condition still exists today – my five children are in three different schools. How, and in what order would I go to get them, if I even could get to them? How would they all handle the waiting for me, or worse, how would they handle being injured? Could I depend on the school staff to comfort my children and make sure they were as safe as possible? Unfortunately, I think the answer to that question, at least for my three children with disabilities, is NO.

In two of the three schools attended by my children, the teachers of children labeled with severe disabilities are advised not to take their kids outside for fire drills. So, how will the teachers and the students know when the loud buzzer is signaling a drill or an actual event? The cynical me thinks the disaster plan for children with disabilities is to sacrifice them in favor of getting the non-disabled to a safe place.

But what if I was at home with my children when a disaster struck. I asked myself do I have a disaster plan in place, and especially one that addresses the significant needs of my children with disabilities? The answer is no, unless you count the jumbled list of thoughts in my head a disaster plan. So, while I am questioning and suggesting and demanding that my school system develop a comprehensive disaster plan, I need to do the same thing myself at home.

It’s been almost ten years since the September 11th attacks, and still I have done nothing to prepare myself and my family for a disaster. Perhaps the events in Japan will be the impetus I need. I certainly hope so.

After googling a bit, I found some good resources to help me down that path. They are listed below and I suggest everyone, especially families who have family members with special needs, take the time to review them. (Due to high traffic related to the Japan disaster, the Red Cross site may be down intermittently.)

• Red Cross Disaster Preparedness for People with Disabilities


• FEMA - Preparing for a Disaster / People with Special Needs


• Ready America for People with Special Needs


• DisabilityInfo.Gov - Emergency Preparedness

Soup with Goldfish Crackers

My friend, Lynnette, is a single parent to a beautiful daughter named Brooke. Brooke has severe disabilities and lives each day with a trach and a ventilator. She goes to her neighborhood school and has nursing support while at school, and for a few hours each Saturday. Other than those times, Lynnette is her only caregiver.

Lynnette works full-time at a school that serves children with severe disabilities. She has dedicated her life to caring for the most fragile children, children who like Brooke, have smiles that light the world and needs that often seem overwhelming.

Oh, and Lynnette has multiple sclerosis.

Why am I telling you all this? Well, I'm going to ask each of you a favor.

Lynnette, as you can imagine, has to take a lot of time off from work. Mostly the time off is for Brooke's doctor's appointments, but often the time is for her own doctor's appointments. It doesn't take long at all for all Lynnette's school leave time to be exhausted. She is now in the situation of having to take leave without pay. Her paychecks are hundreds of dollars short each time. Imagine for a moment how difficult that must be for a single parent. But Lynnette, like most of us parents of children with significant disabilities, has her priorities and nothing, not even lost pay, will stand in the way of caring for her daughter.

Ok, here comes the favor.

Twice a year, Lynnette's school has a contest to see who can collect the most Campbell's Soup Label points. The winner gets a full day off. That is like manna from heaven to Lynnette.

So I need your labels! We need to make sure that Lynnette gets that day off - and that her burden is lightened, if only just for a day. And in the process of helping Lynnette, we will also be helping her school and the precious children that attend there.

The labels are on every type of Campbell's soups. The Soup At Hand ones have 5 points each. The regular soup cans have 1 point each. And recently I found some boxes of Goldfish crackers that have 100 points each!!

I will gladly reimburse anyone for sending me labels. If you are able to help, email me (email link is on the right side of my blog), and then I will send you my address.

Thank you in advance for considering my request!

Good News Friday

Here are a few stories I found this week.

Although the robot in this story looks a little creepy to me, apparently making it look as human-like as possible has a real benefit for children who are autistic.

Finally, my conservative and not-very-disability-friendly state is doing something right. Due to the efforts of some students from Northern Virginia, sign language may now be offered as a foreign language credit in Virginia schools - assuming the Governor signs the bill. Come on, Bobby, do the right thing.

While being able to 'see' Facebook photos might not be my first choice for someone who is blind, the technology behind this effort holds great promise!

And one more bit of technology - We may not use cash as often as we once did, but there are still times when it comes in handy or is necessary, and that can pose some problems for the visually impaired. LookTel has released a Money Reader app for the IPhone that can recognize bills up to $100 demonination and then speak the amount to the person who is blind. How cool is that?!



Happy weekend, everyone!

Repurposed Sight Centers in the Brain

My sweet Ashley can use inappropriate language quite well. She signs it instead of speaking it, but I learned a long time ago, that not only was she making the signs correctly, she was using them in the correct context.

I've never really known where she learned those inappropriate signs. Most of them were ones I had never seen or used. Keep in mind that she is deafblind. More than likely she wasn't seeing the signs too clearly, even from her peers. But somehow she has learned them, and uses them well.

I may now have a few more clues into the functioning of her brain that helped her learn the signs and learn to use them appropriately. Checkout this post from a blog titled, "Wired Science". This is fascinating - well, at least to me!

In the brains of people blind from birth, structures used in sight are still put to work — but for a very different purpose. Rather than processing visual information, they appear to handle language.

Linguistic processing is a task utterly unrelated to sight, yet the visual cortex performs it well.

“It suggests a kind of plasticity that’s even broader than the kinds observed before,” said Marina Bedny, a cognitive neuroscientist at the Massachusetts Institute of Technology. “It’s a really drastic change. It suggests there isn’t a predetermined function an area can serve. It can take a wide range of possible functions.”

In a study published Tuesday in the Proceedings of the National Academy of Sciences, Bedny’s team monitored the brain activity of five congenitally blind individuals engaged in language-intensive tasks.

Immense neurological plasticity was suggested by research conducted in the late 1990s on “rewired” ferrets — after their optical nerves were severed and rerouted into their auditory cortices, they could still see — but such studies, already ethically troubling in animals, would be unconscionable in humans.

Instead, researchers have used brain imaging to study plasticity resulting from natural sensory deprivation in people. They’ve found that the visual cortices of blind people become active as they read Braille. It wasn’t clear, however, whether this was a function of Braille’s spatial demands, which overlap with the spatial aspects of sight, or a radical repurposing of supposedly specialized areas.

In Bedny’s study, the brains of blind people were analyzed as they listened to complete sentences — a relatively high-level comprehension task. Then they were given lesser linguistic challenges, from listening to lists of unrelated words to hearing sentences played backwards, or trying to comprehend grammatically structured speech containing nonsense words.

The results were twofold. Blind people’s visual cortices clearly responded to language, not to space. Moreover, they were most active in response to high-level language demands, just as the brain’s “traditional” language centers are.

Implications of the findings are many. Some neuroscientists have proposed that human brains are hard-wired for language, with specific regions evolved for the task. While our brains are obviously well-suited for language, its performance by visual centers suggests that more than hard-wiring is at work.

“Language is a property that emerges out of the system, rather than a magic-bullet solution from one brain area,” said Bedny.

Indeed, the brains of congenitally blind people may even hint at the human brain’s early state, with “visual” centers open for processing different types of information, and only later becoming involved in vision.

Bodny is now using behavioral tests to investigate in greater detail how blind people process language. “We really want to know what sort of things are blind people better at,” she said. “Parsing complicated sentences, with different grammatical structure? Might they be better at resolving ambiguities? If they’re listening to several things at a time, can they parse two speech streams rather than one? We don’t know the answer to those questions yet.”

Special Exposure Wednesday

I love this shot! If you don't know what it is, look at my blog post from this past Monday.

The Lure of the Open Road

Virginia Tech University has been working with the National Federation of the Blind to develop a vehicle which can be driven by someone who is blind. From a prototype in 2009 to driving the Daytona Speedway in January of this year, it’s truly amazing to watch.

The Today Show did a feature this past weekend on the car and the driver, and if you didn’t know better, you’d swear the driver was not blind.

Here is a YouTube video that explains the technology behind the vehicle.



And here is an article that appeared in Collegiate Times

When Ashley finds out about this she will be pestering me to get her one!! She is my child who would love to jump in the car and go driving everywhere. She is also the one who would probably get a speeding ticket within the first week of driving.

But the child I want to convince to learn to drive is Ronnie. He’s not blind, but he believes that he cannot ever drive because of his spina bifida and the fact that he uses a wheelchair. I tell him all the time that there are special hand controls for cars, and he just signs, “silly, no there aren’t.”

So where does a person that needs to use hand controls for a car learn to drive? Perhaps if I could show him such a place, he would believe me. Confidence and belief in his abilities are not his strongest points, but I aim to change that!

Oh, and one more thought, how would a blind person get a driver’s license if they can’t pass the eye test given at DMV???

Crashes and Smiles

Want to know how to make a mother's heart skip not just one beat, but many, many beats? Tell her that her youngest child is going to play wheelchair rugby!

Wheelchair rugby is a cross between basketball, football and soccer with a whole lot of bumper car thrown in. Think crashes, spills and super fast wheeling. Ronnie did a marvelous job - I was a nervous wreck!

Here are some photos my son, Chip took during the scrimmage:

Welcome To My World - The Evening

4:30 PM Arrive home from office

4:45 PM If it’s Tuesday, get Ronnie, his braces, his crutches and his chair in car to head to physical therapy. If it’s Thursday, get Ronnie, his orthotics, his chair and his basketball jersey in the car to head to wheelchair basketball practice. If it’s not Tuesday or Thursday, sit at table while Ashley eats dinner.

5:00 PM Change clothes, pick out next day’s outfit, while Ashley is getting her shower.

5:15 PM Prepare Ashley’s medications and get her nighttime ‘things’ ready.

5:30 PM Go through nighttime routine with Ashley, including hair drying, lotion applying and arguing over which pajamas to wear that night.

5:45 PM Tuck Ashley in to bed

5:47 PM Begin making dinner for the rest of the family. While dinner is cooking, make sure backpacks are ready for the next day and deal with any school forms and mail. Check phone message and return calls.

6:15 PM Eat dinner

6:45 PM Clean up dinner dishes, start dishwasher, start a load of laundry

7:00 PM Iron work clothes for the next day, plug in cell phones, pack computer bag

7:30 PM Make lunches for everyone for the next day

7:45 PM Check work email and handle anything that can’t wait. Spend a few minutes reading blogs and Facebook.


8:00 PM Move laundry to dryer, start another load of laundry, straighten house

8:15 PM Begin watching an 8:00 PM television show while relaxing on the couch (thank goodness for DVR’s which allow me to record and watch a show on delay).

8:30 PM Unload dishwasher, set out breakfast dishes for the next day, feed cat

9:00 PM Fold laundry from dryer, move next load from washer to dryer, tell boys goodnight, administer kisses and I love yous, turn out lights, turn on alarm system


9:15 PM Get myself ready for bed, check work email one more time, watch some mindless TV show or read

10:00 PM Turn out lights and go to sleep

12:30 AM Get up the first time to tell Ashley to get back in bed and stop pulling clothes out of her closet

3:00 AM Get up the second time to tell Ashley to get back in bed and stop slamming her door

4:30 AM See yesterday’s post...

Welcome To My World - The Morning

4:30 AM Wake up to the soft sound of music on my alarm clock. Make my bed.

4:35 AM Take a shower and wash my hair

4:50 AM Dry hair, put on makeup

5:15 AM Get dressed in office attire

5:20 AM Pack lunches for all the kids, feed the cat, feed the fish, start a load of laundry

5:30 AM Get backpacks ready and place near the door, set out youngest son’s braces

5:45 AM Prepare Ashley’s medicine, wake her up, pick up the room she has trashed overnight

6:00 AM Help Ashley get dressed, prepare her breakfast, feed her

6:15 AM Guide Ashley to the couch for a quick nap before the school bus arrives

6:20 AM Eat a bowl of cereal, move laundry from washer to dryer

6:30 AM Fold the laundry that was done the previous night, put it away, pack my computer bag

6:45 AM Wake up oldest son and steer him towards the shower

6:50 AM Pack my lunch, load computer, lunch and purse into car

7:00 AM Wake up other two sons, prepare their breakfast and have it waiting at the table for them

7:10 AM Sit down for 5 minutes and watch the Today Show

7:15 AM Wake Ashley from her nap, steer her towards the restroom

7:20 AM Help Ashley comb her hair, plop her in front of Sponge Bob for a few moments

7:25 AM Nag two youngest son’s to get their butts in gear

7:35 AM Make sure everyone can find hats, gloves, coats, signed school forms, etc.

7:40 AM Watch 5 minutes of Sponge Bob with Ashley

7:45 AM Lock up house and move everyone to the end of the driveway to meet the bus

7:52 AM Get everyone and all their ‘stuff’ on the bus, kiss, kiss, love you, bye

7:55 AM Get in car and drive downtown

8:30 AM Begin work at my (paying) job (note - I've already been up for four hours)

Special Exposure Wednesday

Spring is just about ready to burst forth, and I can't wait! Seems my forsythia and camellias don't want to wait much longer either!

Doing It Right

Want an example of inclusion at its best? Watch the Amazing Race on Sunday nights.



This season’s race brings back racers from previous seasons – teams who did not win, but came very close to winning. And, two of my favorite teams are back!

Luke is Deaf and is racing with his mother, Margie. Zev is racing with his brother, Justin. Zev is diagnosed with Asperger’s Syndrome.

The really glorious thing? Not one iota of special attention is given to either team. They race, they stumble, they argue, they laugh, they look silly – just like every other team in the race. The show doesn’t spotlight them, advertising their ‘token’ disabled person. The host makes no big deal about it, but does impress me greatly just because he learned some sign language to be able to communicate with Luke. And that’s all the host does – communicate. He doesn’t draw attention to his signing – he doesn’t make a spectacle of Luke. He doesn’t comment about Zev’s Autism. They are two teams racing, just like all the other teams.

Luke and Zev are both funny young guys. Luke finally gets a chance to drive, and is all smiles as he gives a big thumbs up to the camera. He talks about one of the other teams – two beautiful young women – and calls then his race girlfriends.

When one of the challenges faced by all teams is to draw on their inner artist, Justin says Zev will be great at that because he is artistic. Zev says, “Autistic too!” The two young men cut up constantly and you can see in Justin’s eyes how much he admires and loves his brother.

I am thrilled to see people with disabilities on a mainstream television show where their disability is not the focus of the show. This, in my opinion, is inclusion at its best.