Defining Moments

Are there things in your children's life that you feel have dramatically changed things for the better? Sort of a shot-it-from-the-rooftops better?

Since my 19 year old son left today for the Army, I was reflecting on both his past and my other children's past. I realized that there have been momentous days in each of their lives - moments that I believe really changed the course of their lives for the better.

For Corey, my 19 year old, making the decision to join JROTC in the 9th grade was his moment. Corey as you know if you are a long time reader of this blog, had an early childhood that was difficult to say the least. Raised for the first 10 years of his life on the streets of Baltimore by an alcoholic, drug addicted birth mother took its toll on him. But the love of family (he joined me at age 12) and the order and consistency of JROTC really prepared him for a future that will be bright.

For Ashley, I believe the moment that set her life on a better course was when she got her G-tube at age 2. Born at 26 weeks gestation to an alcoholic birth mother, and facing a ton of medical issues, she was headed down a very difficult health path. But the G-tube allowed everyone to relax and work on feeding issues as well as the rest of her medical issues. I truly believe that her good health today was defined at that moment of surgery.

For Jessica, her moment came in middle school. Prior to that time, Jessica had battled rages and the inability to attach to anyone, least of all me. But in middle school, her teacher and the rest of the school staff finally joined forces with me to prove to Jessica that she could trust and love and attach. Though she still has demons to battle, I believe that she will do so knowing that she is loved.

And finally for Ronnie, his life changed drastically when he got an IPhone. I know, I know - that doesn't sound like that big a deal. But what that phone did was to open his world to his peers. In a world where not a lot of teenagers know sign language, he is now able to communicate via text with all his peers. And for those peers that do sign, he is able to use the phone as a video phone and sign back and forth with a peer. His world opened up that day he got the phone, and it continues to get larger with each passing day. His communication abilities, his literacy, and his technical knowlege is growing by leaps and bounds.

What about your children? Have there been defining days in their lives? I would love to hear about them!

Thinkbeyondthelabel.com

I love these videos, and not just because in a very few years, I will have two children with disabilities entering the workforce (hopefully).

Pray for Robbie

ROBBIE WAS FOUND ALIVE FRIDAY AFTERNOON!! AFTER 6 DAYS, LITTLE ROBBIE WAS FOUND IN A QUARRY, CURLED IN THE FETAL POSITION, COLD AND DEHYDRATED, BUT ALIVE AND ALERT!!! HE WAS IMMEDIATELY AIRLIFTED TO THE HOSPITAL WHERE HE WAS REUNITED WITH HIS FAMILY!!

Robbie Wood is 9 years old and has a severe form of autism. He can't speak, and he likes to run and hide from his caregivers. Last Sunday afternoon the unspeakable happened. While on an outing with his father, his father's girlfriend, and his brother (who also happens to have autism), Robbie darted away. The outing was in a civil war battlefield park, a park that is 80 acres in size, and surrounded by a thousand more acres of dense forest, cliffs and a river.



As of the time this blog was written (Wednesday afternoon), Robbie still had not been found. County police, state police, professional search and rescue organizations and 1000's of volunteers have been combing the vast area looking for Robbie. Robbie was dressed only in a long sleeve teeshirt and athletic pants - clothes not warm enough for our 40 degree nights. And, he hasn't had any food or water since Sunday afternoon.

Everytime I think of what Robbie is going through, as well as what his parents, other relatives and friends are going through, tears flood my eyes. Each passing hour makes keeping grim thoughts out of hopeful hearts harder and harder. There have been vigils and prayer circles and volunteers who vow never to stop looking for Robbie until they find him and bring him home. But there have also been people who offer negative comments about Robbie's parents.

Comments like, "How can a father just let a son wander off?" and "What is wrong with these parents?" and "Robbie has scratches and bruises on his face in that picture? Did the parents do that to him?". And that's the milder of the negative comments and questions.

I know what it is like to raise a child with significant special needs. I understand the running and hiding. I have experienced first hand the self-injurious behaviors that to an untrained eye would point to a parent or caregiver. But the police have given absolutely no, as in a big fat NO, indication that this is anything other than Robbie has run away.

Why do people who have no clue about parenting a child with autism feel the need to ask questions and make comments that do nothing but hurt the family more? Honestly, it really, really pisses me off...

Please keep Robbie and his family in your prayers.

Special Exposure Wednesday

So where are the trick or treaters??? Punkin Face is very anxious to see them!!

Hailing a Cab (maybe)

Although we've never made the trip, my family would love to visit New York City. We've never been in a city that large or in my opinion, that exciting, and a visit one day is very appealing to us. But I may now have to rethink that...

You see, New York City's Mayor Bloomberg, thinks accessible taxis are a waste of time and money. And of course, one cannot visit NYC without at some point having to take a cab. Here are a few of Mayor Bloomberg's comments about accessible cabs:

"Their suspension is much worse, so the average person riding in them finds them really uncomfortable,"

"If you're in a wheelchair, it's really hard to go out in the street and hail down a cab and get the cab to pull over and get into [it],"

Mayor Bloomberg also said that accessible cabs would inconvenience able-bodied passengers, and noted that hacks don't like them because they are so spacious that the drivers can't establish rapport with riders - and get smaller tips as a result.

The sad fact is that only 231 of the city's 13,000 taxis are accessible to people with wheelchairs. And since my family has two wheelchair users, I'm guessing a trip to NYC is not in our future...

According to the New York Daily News:

Champions of the handicapped immediately ripped Bloomberg's "insulting" riff.

"The mayor's completely out of touch," said Assemblyman Micah Kellner, a Manhattan Democrat who was born with cerebral palsy. "When was the last time Mayor Bloomberg used a New York City taxi or a wheelchair?"

Added Edith Prentiss of the Taxis For All Campaign: "It's a sad day for New York City when a mayor works so hard to deny people like me the right to take a taxi. It's wrong, it's indefensible,and it won't stand."

So where do you stand on this issue? Do you think New York City needs more accessible cabs, or do you think the Mayor is correct - it's not a realistic solution? Keep in mind as you answer that question that the decisions made in New York City have the potential to drive decisons for smaller cities - maybe even yours.

(image courtesy of David Handschuh, New York Daily News)

A Tribute to Fred Fay

“Disability is equal opportunity," Fred Fay told the Globe in 1998. “Anyone can qualify at any moment."

His moment arrived in his junior year of high school, when his hands slipped as he performed a move he often executed on a trapeze in the backyard of his family’s Maryland home.

Left a quadriplegic by the 10-foot fall, the young man had to decide what he would attempt to do with the rest of his life. Choosing activism, he became an early advocate for disability rights, playing a role in everything from ensuring the Metro subway in Washington, D.C., was built to accommodate wheelchairs to lobbying lawmakers to adopt the Americans with Disabilities Act.

Dr. Fey passed away on August 20th of this year at the age of 67, but his legacy will live on. A Life Worth Living, a film about Fred's life and his role in the Disability Rights Movement, is scheduled to air on PBS on October 27.

Check out this trailer for the show, and then be sure to check your local listing for the air time on October 27th.

Unstoppable

October is Disability Awareness Month.

October is Down Syndrome Awareness Month.

Did you know that October is also Spina Bifida Awareness Month? It is, and because I have an amazing son who happens to have Spina Bifida, I wanted to share some information with you!

* Every day in the United States, an average of 8 births are affected by Spina Bifida or a similar birth defect of the brain and spine.

* Spina Bifida remains the most commonly occurring complex birth defect in this country.

* The root cause of Spina Bifida is unknown and the effects for each person are different.

* Spina Bifida is a multitude of problems that affect the mind, the body and the spirit.

* Advancements in treatment and prevention have opened new doors for those with Spina Bifida.

* While it presents unique challenges, those affected by Spina Bifida are able to attend school, work, raise a family, and spend time with friends just like everyone else.

And as you know if you are a regular reader of this blog, Spina Bifida does not stop Ronnie from being a wheelchair basketball star!!!

To celebrate this month of Spina Bifida Awareness, the Spina Bifida Association hopes to bring to light through pictures the successes of those who live each day with this birth defect. There are a lot of ways in which individuals and families can get involved, and one of those ways is by submitting your vote for the “Celebrate SB,” Facebook photo contest designed to acknowledge the accomplishments of the Spina Bifida community. Voting will be open through October 31st on Facebook. Fans can vote only one time per day during this period on their favorite photo!

Please take a few moments and check out the photos! Then cast your vote for your favorite. In the process, you might just be surprised by the non-limiting nature of Spina Bifida!!

Being the Meany

I don't want to tell my children with disabilities that they can't do something, but I'm finding that I have to sometimes.

Ronnie is scheduled to attend a basketball event at a college about 45 minutes from our home on Thursday night, a school night. He probably will not be home until at least 10am and then has to get up early the next morning.

He also has asked to go to the school homecoming football game Friday night, again not getting home until at least 10pm.

Saturday morning, we are scheduled as a family to drive to the mountains, about an hour away, to pick apples. It will be a long day.

Given his medical issues, I think trying to pack all those things in during the course of 36 to 48 hours will stress his health. He, of course, doesn't agree with me. But as the parent, the final decision rests with me.

I have told him that he can go to the basketball event, and that we will go as a family to the mountains, but he can't go to the football game. I believe he needs Friday night to rest and take care of himself.

As you may imagine, I am not his favorite person at the moment. How have others of you dealt with this? Kids his age (16), disabled or not, feel invincible. But they often do have health needs that require us to step in and make decisions. Any advice???

Special Exposure Wednesday

Bernard, our scary butler, consented to have Chip take one picture - as long as the picture turned out flattering and would get him a date. What do you think? Does Bernard have a chance?

Horror Come True

I wrote last week about my worries for Ashley's future, and here is a story about just such a nightmare come true...

Four Disabled Adults Found Chained in Basement

And here's an update:

IDs and Power of Attorney Paper work found

Room in the Nest

Being the parent of adult children is not always fun. I remember the disappointment in my mother's voice when I had to call her and say I wouldn't be coming for a visit because something else in my life took priority. It really shouldn't have but when you are a young adult and know everything, priorities are often skewed.

I experienced the same disappointment this past weekend.

My 19 year old son, Corey, is leaving for Army basic training very soon. He will be many states away and I don't know how long it will be until we see him again. He's been told that immediately after basic training, he will be going to an 18 week class in yet another far away state.

To both celebrate his future and to spend one last day together as a complete family, I planned a big meal and looked forward to having all my children home for the day. Unfortunately that didn't work out.

Jessica called me in the morning, and I reminded her that we would see her at 10am. She said OK. 10am came and went, as did 11, 12, 1 and 2. Our meal was planned for the late afternoon, and I kept hoping she would show up in time for that.

She didn't.

So my plans for one last family portrait with everyone in it fell apart. Corey asked several times if Jessica was going to show up, and I had to tell him I didn't know. I think he, like me, was disappointed.

I haven't heard from Jessica yet, and I guess I should try not to sound disappointed when we do talk, but it will be hard.

Sometimes the momma bird has to kick the little ones out of the nest, and sometimes the momma bird wishes they would stop back by once in a while.

A Battle With The Dark

Being a parent to a child with significant disabilities is very difficult. But one of the most difficult things early on is wondering whether your child will live or die.

How many nights have you gotten up multiple times just to make sure your child is still breathing? How many times have you sat in a hospital room, clutching your child's hand and praying that they will stay with you at least a little while longer? How many times did you look into their innocent eyes and feel the tears pooling in yours because of fear, fear for their survival?

I've been there, and actually still go there from time to time, as I am sure many of you do. Each seizure, each illness, each pale face and dark circled eyes shakes loose the fear that we try to tuck neatly away in our hearts.

For me, Ashley has survived. She has done what all the doctors said she couldn't do - live. She has definitely had her serious illnesses and her brushes with death, but she has kicked that reality to the curb and is today a pretty healthy and definitely vibrant teenager.

And I find that my fears for her survival have shifted to fears for my survival, and the knowledge that I will one day have to leave her.

Ashley doesn't and probably never will understand the concept of death. If I even leave the house for an hour to go grocery shopping, she is signing and asking for me constantly. And, she will refuse to go to sleep unless I kiss her goodnight. What will she do when I can't give her those kisses anymore?

I know this is a very dark post, but that is where my mind has been recently. Rather than the fear of Ashley leaving me, I fear my leaving her.

There aren't many places a person with deafblindness and medical issues can go as an adult. There aren't many people who even understand her disability. And there are definitely not people who will provide loving care, or even appropriate care, for her.

Though she may not be able to label her feelings, she will feel total abandonment. She will not undestand and she will probably be angry. Those feelings will translate into behaviors that others will not understand and will not support. That lack of undestanding will cause people to make decisions about her that I know deep in my heart will not be good.

Just before I adopted her, her doctors wanted to institutionalize her. If that had happened, she would in no way resemble the person she is today. But does her future without me hold that same threat of institutionalization? If that comes to be, she will lose herself and her life will become my worst nightmare.

I don't have any answers. This post really has no point other than I needed a place to voice my fears lest they totally consume me. Enough for now....

Dizzying

Advances in technology for people with disabilities seems to be happening at a dizzying speed. Every week, I read multiple articles about planned or already-in-use technology. Here's two from this week:

A young man who was left a quadriplegic by a motorcycle accident used his thoughts to control a prosthetic arm to reach out and stroke his girlfriend's hand:

"It wasn't my arm but it was my brain, my thoughts."

And, in a two-month summer course on high-performance computing, promising undergrads compete to create innovative applications. This summer's winner developed a touchscreen Braille writer that stands to revolutionize how the blind negotiate an unseen world by replacing devices costing up to 10 times more.



These are very exciting times for people with disabilities, and I think they will get even more exciting as we move into the future!

Special Exposure Wednesday

I think this makes the parking situation in my driveway quite clear...

Rare Video of Helen Keller

I've written several posts in the past about a technique for teaching a person with deafblindness to speak. That technique is called Tadoma, named after two children, one named Tad and the other Oma. Really. Here is one of my posts on the subject.

Although I have read a lot about Tadoma, I had never seen it actually done. We tried with Ashley but I never knew if I was doing it correctly.

This weekend I found this rare footage of Helen Keller using the technique with her teacher, Annie Sullivan. The video is really amazing, and Helen and Annie even more so!

Compassionate Sportsmanship

The inaugural wheelchair basketball tournament for the Sportable Spokes (Ronnie's team) was held at the University of Richmond this weekend. Teams from North Carolina, Washington, D.C. and Long Island, New York joined the Spokes for as many games as could be packed into the two days.

This was the first tournament hosted here, and only the second tournament in which the Spokes have competed. Last January's first tournament was in Smithfield, NC. During both tournaments, I was struck by the level of compassionate sportsmanship shown by all the teams involved.

What do I mean by that? Well, wheelchair basketball teams are composed of young people with many different levels of abilities. On Ronnie's team there are boys like him with Spinda Bifida, boys who experienced life changing accidents, boys with different kinds of birth injuries, and even one boy with a trach. There are very small boys, very large boys, and a whole lot inbetween. Some play very competitively, and some are just happy to be able to wheel back and forth on the court. It's what happens when teams like that come together that makes magic.

There is, of course, a lot of competition - a lot of rough play, wheelchairs crashing into each other, a lot of yelling out positions and a lot of stealing the ball. But there is also a lot of rolling aside so the smallest boy on the team can try for a basket. If the score is heavy on one team and light on the other, there is a lot of 'letting' some scores happen. And, I have never seen the anger that erupts sometimes when teenagers get together for competitive sports.

When I first witnessed this during the North Carolina tournament, I thought perhaps it was a fluke - maybe just some really good kids on a team ensuring that everyone had a good time. But I saw it again this weekend - among all the teams that played.

The kids on the team, with no orders from their coaches, made sure everyone had a chance to play as well as a chance to shine. After the games, there were true smiles, true 'thanks', and true joy. It's this kind of behavior, behavior initiated by the kids themselves, that reaffirms my faith in the future.

I am so proud of the Spokes and all the other teams that played this weekend, and we are all looking forward to the next tournament. Chip was the official photographer for the tournament, and Ashley is shown below modeling the official t-shirt! Here are a few pictures - more to come soon!







The young man below is from the Long Island team and after the last game, showed us all one of his 'special' wheelchair moves!



And finally, here is a link to some pictures that appeared in our local newspaper.

Phillips or Flat Head?

I’ve written many times before about my worries for my children with significant disabiltiies as they move to adulthood. It seems that each year older that I get, the more I worry. Go figure!

The school system, with enough prodding, will do a passable job of preparing children with significant disabilities for the workforce. I’m not sure they do enough, but I believe there is only so far they can be pushed (the school system, not my children). The school system also concentrates a lot on things they label ‘life skills’. That usually means cooking and cleaning up but not much more.

A lot of the preparation for true life skills comes from parents. And with my children, I have concentrated on some of the more common skills – being able to do laundry, make a bed, set a table, run the vacuum. But there are so many other things – absolutely critical things, in my opinion – that we often forget. So here is the start of my list of those other things, and I would like to know if you have things that should be added to the list.



I want my children to:

• Know how to use a plunger to unstop a toilet


• Know that if the water to the house if unavailable (which has happened to us during hurricanes), a toilet can be flushed by dumping a bucket of water into the toilet bowl


• Be able to flip a blown circuit breaker and maybe even replace a fuse


• Know how to make a good friend and how to keep that friend


• Know how to be a good host or hostess when people visit


• Understand what a plumber does, what an electrician does, and what a handyman does


• Know how to hang wet laundry to dry (in case the dryer breaks), hang a picture, and hang up clothes


• Understand how to kill a bug rather than drowning it in pesticide


• Know the purpose of a door’s peephole and how to work the home alarm system


• Know how and how often to change the batteries in smoke detectors and carbon monoxide detectors


• Know how to sign for a package


• Know how to locate a pharmacy, drop off a prescription, and then pick up and pay for that prescription


• Know how to use bleach appropriately and know which cleaning solutions to never ever mix


• Understand when and how to use a PERS (Personal Emergency Response System)


• Know what to do if they are in a car accident or witness a car accident


• Know how, when and who to ask for help


• Understand how to dress and act in a courtroom, at the theatre, and in church


• Know that they can challenge what a doctor, nurse or other healthcare provider tells them


• Know how to plant flowers and a vegetable garden, and then how to harvest those things


• Know how to paint a picture, a wall and their nails


• Know what to do if they get a small cut or scrape


• Know what things they want in a lifetime spouse or partner, or even a roommate


• Understand that having a pet requires attention and responsibility on a daily basis


• Know how to use a screwdriver and the difference between the types of screwdrivers

OK, I’ll stop there for now. Please add as you see fit!

Minimizing the Fog, Maximizing the Smiles

Ashley’s semiannual visit with her neurologist this week went very well. I was very excited to tell him about weaning Ashley off two of her meds – the two that in my opinion have the worst side effects.

She had been on Risperdal since early elementary school – about 11 years. Initially it was prescribed to help with self-injurious behaviors. I always believed that if she could develop a communication system, the behaviors would be significantly reduced or would disappear. But since things in the school system seldom move at the pace I would prefer, getting an appropriate communication system in place took a while. But I was correct – as her communication, both expressive and receptive, increased, the self-injurious behaviors decreased.

So ever so slowly I have been reducing her dose of Risperdal and this summer, ended it completely. The good news – no adverse effects. In fact, she seems happier all the time.

She had also been on Keppra, an anti-seizure medication, for about 8 years. As she approached and moved through the early stages of puberty, her seizures were out of control. At one point she was on four different medications trying to control the seizures, and all we could do was get them down to 5-7 a day. Two of the four medications she took for her seizures – Keppra and Topamax – have a tendency to increase aggressive behavior. Hence, we were tied to the Risperdal.

We ditched the Topamax after just a year because it truly was one of the worst medications I have ever seen, and I didn’t feel like it was making much of a difference with her seizures. This past summer, I decided to try weaning the Keppra also. And lo and behold – after just a small increase of seizures during the weaning process, Ashley is now down to 2-3 seizures a week, and those are usually very mild. And without those other meds in her body, she is so much happier.

Playing with medications for serious conditions likes seizures can be very daunting, but I do recommend that you constantly keep an open mind about them. I don’t regret having Ashley on the meds we have now removed – they helped when she needed the help. But, I am very glad that for the moment we have been able to stop them. She is still on several meds – Depakene and Trileptal for seizures, Clonidine for sleep, Strattera for ADHD (which in her case is very extreme), and Claritin and Nasonex for allergies. And in my dreams, we do reach a time when she won’t need any medications.

For now, though, I love having a less-foggy brained, very beautiful daughter!

Special Exposure Wednesday

See what you are missing if you don't have boy children..... (look closely under the skull's chin and you will see Ronnie's head!)

My Kind of Vacation

If you are the parent or other family member of someone with a disability do you ever get tired of the disability? Do you get tired of the explaining, the questions, the stares, the changes you must make in your life? Do you feel like you work as hard as you can and yet you still cannot make enough of a positive difference for your loved one? Do you just want a vacation from disability?

I read this post today about a Mom who is right there. And this one from a single dad with a disabled son and daughter. And I understand, to a degree.

I have found from reading many blogs from parents of children who are severely disabled that those parents experience so many different emotions than I do based merely on the fact that they gave birth to their child rather than like me, chose their severely disabled child(ren). Sure, we share some of the same emotions – sadness, hope, despair – but there is one big emotion that we don’t share – guilt.

With Ashley, I was not the one who drank to excess during her gestation. I was not the one who was bulimic and chose not to get prenatal care. I wasn’t the one who smoked and did drugs. I am not the one responsible for the effects all those things had on my sweet Ashley.

But I am also not the parent who did everything correctly while pregnant only still to have a child with severe disabilities. That, I believe, is a source of even greater guilt for some parents.

So I think I can understand the words of parents who had no choice in their children’s disabilities. Their words are difficult for me to read, and I think that is because I did have a choice. While I appreciate the raw emotions and the gut wrenching honesty of those parents, I find that it hurts my heart to read their words too often. If I feel guilt, it’s because I walk away from those brutal and honest words, and the pain that is shared. Guilty because I know listening and reading doesn’t do me any good. I will stop by occasionally because I need their perspective, but not often enough that their visions darken mine.

Perhaps that means I am not a very nice person, but I am a parent to children with severe disabilities, children I CHOSE. And my life is richer beyond belief because of those choices.

I don’t want a vacation from disability – I want a vacation with my children without other people handicapping them and our family.

She LET Them Win

We went bowling on Saturday. It was a cold, rainy morning and we needed to find an indoor activity. Since Chip had bought two Groupon coupons for bowling, our decision was made!

Ta Da....Ashley got a strike on the very first ball she rolled!!



The boys were mortified and tried very hard to catch her.





But being the sweet sister that she is, she LET them win!!