Pipecleaner Dreams

Friday Surfing and Tubing

2012-03-02T05:00:00.000-05:00

During my weekly web surfing and YouTubing, I found the following three things of interest...

Ashley would LOVE one of these rooms!

This next video bills itself as the most inspirational video you will ever see. And that is so true!

And finally check out this link to a new reality show featuring women in wheelchairs...Cool!

TGIF, everyone!

Wanting a Bigger World

2012-03-01T05:00:00.000-05:00

Life can be pretty isolating when one has a disability. And by extension, mine has become that way because I have children with disabilities. While many disabling conditions have their own 'groups', the Autism Society for example, I have yet to find a group made up of children with Spina Bifida who are also profoundly Deaf, or children who are deafblind, have seizure disorder, ADHD, and feeding problems. And if one doesn't fit in a "group", other than the group called disability, options for socialization are even further reduced.

In some ways it's not bad to be isolated. My children and I don't have to endure the stares, the looks of disgust, the stepping aside as if what my children have is catching, the 'awwws' of pity, or the ignorant comments and questions (I don't mind non-ignorant comments or questions). There's a warm comfort to be found within the walls of our home where we are all just people, family members, valuable human beings. But every so often, the isolation is stifling and I long for a bigger world than that to be found in our personal 2400 square feet.

Last night was one of those times. I wouldn't say I was depressed, but I was a little bit sad. I miss the impulsive moments of jumping in the car to head to the beach boardwalk or the night out to try out a unique new restaurant. Nothing can be impulsive and spur of the moment anymore. We have to know if a place is wheelchair accessible, if there is kid friendly food available, or if there are medical facilities close by. We even have to decide if we think the other patrons at our outing will be accepting of our differences.

Please don't infer that anything I have said means I regret my decisions to build my family with children who have significant disabilities. Because there is absolutely no regret, and in fact, I want more children with disabilities. I just wish the world was more accommodating, and that we could all be a part of the whole and not just savor our slice of the pie.

To quell my sadness last night, and to feel once again the magnitude of the world, I stepped out onto our deck. It was dark and the stars were out. The only sounds were the sounds of neighbors going about their evening routines, the birds settling in for the night, and the barks of family pets wanting their dinner. I closed my eyes and imagined I was standing on the shore, hearing the waves crash and feeling the salty wind touch my cheek. I took a little 'trip' to the beach and it was wonderful. My sadness lifted for the moment...

Special Exposure Wednesday

2012-02-29T05:00:00.000-05:00

The boy's growing up...and up....and up! Ashley is even starting to like him more since he is getting bigger!

Things They Say

2012-02-28T05:00:00.000-05:00

First, I apologize for the language in the title of this video. But, the content is so very true. I especially like the one, "Oh, it's totally accessible. There's only one step."

What's The Answer?

2012-02-27T05:00:00.000-05:00

I was intially very excited when Ashley came home with a packet of information from our state agency, the Department for the Blind and Vision Impaired. It was an invitation for Ashley to attend a 4 week summer program called LIFE. LIFE stands for Learning Independence, Feeling Empowered.

The brochure said the program was to help students who are blind make the transition from high school to work or futher education. Experience would be provided in how to obtain and keep employment, how to navigate the world as a blind person, and provide opportunities for socialization and group interaction. Sounds great, eh?

Well it did until I started reading the list of qualifications. The one that concerned me the most stated that a student should..."be able to perform self-care activities with minimal supervision."

Ashley is deafblind, not just blind. She has medical issues, specifically seizures which can occur anytime day or night. Because of that, she must have someone very close by at all times. And, she must be monitored at night for seizures. The LIFE program would not provide that kind of support.

This is an issue that I have also faced with Ronnie. There do not seem to be programs that support people, especially young people, who have both a sensory disability and a physical disability/medical issues.

I have never been successful finding a camp for Ronnie. I can find Deaf camps and they aren't accessible for wheelchairs. I can find accessible camps and they can't provide a fulltime interpreter. So he has never gone to camp.

Now I am facing the same thing with Ashley. If she were just blind, she would be welcomed at project LIFE. But because she has significan medical issues which must be attended to, she cannot.

What's the answer...?

Brilliant!

2012-02-24T05:00:00.000-05:00

One of the most difficult tasks that faces me as a single parent of children with severe disabilities is grocery shopping. I either have to push a grocery cart and a wheelchair at the same time, and trust me, I'm not very handy with that, or I have to find someone to stay at home with my children while I go to the store. But I stumbled across Carolinescart.com and immediately saw the solution to my shopping dilemma!

Caroline’s Cart is a shopping cart created for special needs children. It provides parents and caregivers a viable option to transport a child through a store while grocery shopping, without simultaneously having to maneuver a wheelchair and a traditional grocery cart. Check out this video:

Missing Mr. Ralph

2012-02-23T05:00:00.000-05:00

While my two oldest boys, Chip and Corey, were in high school, they had the same bus and same bus driver for all four years. The bus was on time 99% of the time, both for the pickup and dropoff in the afternoon.

For my two youngest children, Ashley and Ronnie, they are lucky if they have only four different bus drivers and busses each school year. There is no consistency from year to year, often from month to month, and that makes it really difficult for both the drivers and aides who need to know my children and the effect of their disabilities, as well as for my children, both of whom do best with a consistent routine. And having the bus arrive on time??? Almost never.

But I finally got lucky with Ashley’s transportation last November. After complaining about the greatly inconsistent schedules of her assigned bus, schedule problems which kept me from ever getting to work on time, Ashley was assigned a new bus and lo and behold, it was a bus driver that she knew!

Mr. Ralph was Ashley’s driver last year for some of the year. He understands her, and often comes up with great ideas on how to make the ride to school less stressful for her. He is always on time which means I make it to work on time. So everything was going great…..until Tuesday of this week.

Twenty five minutes after the allotted pickup time, Ashley’s bus finally shows up with a different driver. As Ashley starts back to her seat, I begin asking the driver to at least radio his dispatcher if he is going to be that late in the future and the dispatcher can call me. Tuesday morning we waiting outside in the sub-freezing temperatures for 30 minutes. The driver immediately went into defensive mode saying he was just a substitute driver. I asked again for a call to the dispatcher in the future, and he just rolled his eyes and turned away.

Wednesday morning the bus was only 10 minutes late, and yet another new driver was in charge. At least she said that she had radioed dispatch, but dispatch never called me. The driver seemed nice enough, but I asked when Mr. Ralph would be back. She said he wasn’t coming back because he had been transferred to another bus.

Deep and heavy sigh…..

Of course, when things are working well, let’s just mix them up again. That seems to be my school district’s philosophy. I completely understand that running transportation for a school district as large as mine is not an easy job. But it is a job that I assume the folks in the department are trained to do. Does it really have to be as difficult as it seems to be?

And why is it always the special education students who have to put up with the most changes? Special education students who do best when life is predictable and routine? Why can’t the bus transportation for my children receiving special education students be as good as it is for regular education students? Maybe, School District, you should try switching the managers of those two departments and see if it makes a difference….

Special Exposure Wednesday

2012-02-22T05:00:00.000-05:00

Every year in late winter, I cut some branches from my forsythia bushes and bring them indoors. For a week or so they look like just dead branches stuck in a vase. But once they start to bloom, I get the first taste of Spring long before Spring even comes knocking at the door!

Pass The Painkillers Please

2012-02-21T05:00:00.000-05:00

I've only had a migraine maybe half a dozen times in my life, but boy when I do....Monday was one of those days. And unfortunately for me, it was also a day that schools were closed.

As most parents of children with severe disabilities know, life doesn't get put on hold just because we get sick. I've often wondered which was harder - (1) when my children are sick, (2) when I am sick, or (3) when we all are sick. And the answer, at least for me is (2), when I am sick. The kids are still their normal unique, needy selves but my reserves are pretty much depleted.

So I took a ton of ibuprofen,which I am not supposed to do because I am allergic to it, but it is the only thing that will even begin to dull the migraine pain. The headaches have been so infrequent that going to a doctor to get prescription meds seems like overkill. Fortunately the ibuprofen helped a bit, and once the kids were in bed and tended to, I headed to bed myself...

So how about you? What are your strategies for getting through the sick times and still taking care of your children's needs?

First Snow!

2012-02-20T08:11:00.001-05:00

We had the first snow of the season yesterday. I honestly thought that with this very warm winter we have had in Virginia that snow was just not going to happen. But, we got about 3.5 inches and it was beautiful. Of course, just two days from now the temperature is forecast to be 70 degrees!!

So, I'm going to pretend this is my jeep and that I am driving through all this snow:

TGIF!

2012-02-17T05:00:00.000-05:00

Someone in this family is NOT a morning person! Happy Friday, everyone!

Pursuing Dreams

2012-02-16T05:00:00.000-05:00

This video could word for word be about my son Ronnie. Well, if you substitute wheelchairs for legs! I have heard the same words from Ronnie and his wheelchair basketball teammates. While I believe schools for the Deaf can provide a good education and experience, I also believe that a full life will not be lived in the Deaf community. The Deaf community indeed has its role in the life of anyone who is Deaf, but the rest of the world doesn't stop and doesn't go away. True success, in my opinion, comes in being able to navigate both worlds.

Special Exposure Wednesday

2012-02-15T05:00:00.000-05:00

I remember when Corey wasn't as tall as this gun is long....:(

Valentines for Special Needs Parents

2012-02-14T11:59:00.000-05:00

Happy Valentine's Day

2012-02-14T09:09:00.002-05:00

Now this is what Valentine's Day is really all about!

Be sure to check out the slideshow link on the right side of the page.

Singing With Their Hands

2012-02-14T05:00:00.000-05:00

Last Friday, the New York Times published an article called "Singing With Their Hands" which chronicles the growth of ASL music videos. I've posted several before, all from the Deaf Performers Network.

“Searches for ‘ASL’ over the past few months are the highest we’ve seen them,” said Kevin Allocca, the YouTube trends manager. “And 40 percent of all videos tagged ‘sign language’ on YouTube were posted in just the past year.”

One of my favorites is by Sean Berdy, the actor from the TV show Switched at Birth. He does a sign rendition of Enrique Iglesias’s “Hero.”

One of the more prolific posters of sign videos is Michael Chase DiMartino. His YouTube Channel, called Mr. Chase's Sign Channel, is full of fun music like:

Check out some of these - it's like Karaoke for the Deaf!!

Things I Don't Understand

2012-02-13T05:00:00.000-05:00

So, can someone tell me exactly what an "educational interpreter' is supposed to do? I think I heard somewhere that there are slightly different than regular interpreters, but in what way?

I'm not real comfortable with the way things are going with Ronnie's educationl interpreter. I don't think the interpreter is supposed to act as a counselor, or suggest courses of action, or even discuss things that aren't related to the school day. But Ronnie's interpreter does.

It makes me uncomfortable. If doing those things is outside the ethical interpreter mode of operation, it makes me wonder what else the interpreter might do?

But then again I could be way off base since I really don't understand exactly what the educational interpreter is supposed to do. Can anyone help?

***********************************

One more thing I don't understand about school - why does my child with severe disabilities bring home a course selection sheet that lists all the classes she CAN'T take? What is the point? Is it to make me sad? If so, it'w working...

Miss Deaf America Snubbed

2012-02-10T05:00:00.000-05:00

I searched and searched the wide web for a video of Miss Deaf America signing America The Beautiful at last Sunday's Super Bowl. I know she was there - well, I assume she really was there - but I don't know for sure because she was never on camera - or even anywhere near Kelly Clarkson while she sang the same song.

Rachel Mazique, the 2011 Miss Deaf America, had this to say about the snub:

“I truly hope that this becomes a teachable moment for everyone involved, and that American Sign Language renditions of these iconic songs are broadcast in future Super Bowls rather than being a token gesture.”

A group of her supporters are asking that NBC grant her an interview on the Today Show, and have started a petition in support of that request. There are already over 5000 signatures. If you would like to add your name, here is the link.

And apparently this same thing happened last year. Let's make sure that next year is different...

Your Order Please?

2012-02-09T05:00:00.000-05:00

Being the parent of a child with special needs prepares us for many 'real (paying)' jobs, if only we could convince an employer and if only some of those parents had time for a 'real (paying)' job.

We have so many skills that would easily transfer to the working world. We:

have a ton of medical knowledge

know how to negotiate and get our points across

know how to sell an idea and make others think it was their idea

know how to make something out of nothing or very little - crafts, meals, educational tools, etc.

can survive on very little sleep. Hospital interns have nothing on us in that regard.

know how to find resources from the most unlikely of places

understand legal systems and how to work within a government bureaucracy

are persistent and never give up

are loyal and caring and strong

show up for work regardless of the weather or our state of wellness

etc. I'm sure you could add many more things to this list (and please do)

But my current favorite skill which I know I could easily turn into a real (paying) job is supply clerk.

I maintain a complicated inventory of supplies - catheters, G-tubes, syringes, depends, and medicine out the ying-yang - prescription and over the counter. I always know when it is time to reorder items, and of course they all have their own reorder schedule even though I try very hard to get things synced up. I dispense items as needed (which is constantly), and share/trade items as appropriate. I have a stockpile of wipes, tissues, laundry detergent, 4 types of shampoo, conditioner, body wash, soap, toilet tissue (we seem to use a ton of this), and all the special foods/drinks that my children need. I schedule reordering (trips to the store) each week so no one goes without, and my friends often ask to borrow something because they know I am such a good supply clerk!

I would estimate at least 45 minutes EACH DAY is spent opening delivery boxes, checking supplies, replenishing supplies, recycling and taking out trash.

What about you? How long do your supply clerk duties take every day? And if you have multiple children with special needs, did you see your workload grow exponentially with each added child? I did!

Special Exposure Wednesday

2012-02-08T05:00:00.000-05:00

I'm thinking maybe we should have named this monster dog Clifford rather than Cooper....

Entertaining????!!!

2012-02-07T05:00:00.001-05:00

Why are we failing as a society, a society in which a child in special education is set on fire by regular education students at his/her school?

New Port Richey Student Set On Fire

How can a middle school student, and 11 year old student, ever think that is ok? What are we missing? What in society even plants such an idea into a child's brain?

The article states that the two students who set the other child on fire have disciplary records at the school. What has been done in the past? How were those displinary issues handled? Where along the way did the two students think it would be 'entertaining' to set another child on fire, a child who may not have seen the danger in the situation?

These are all rhetorical questions, but this whole thing just makes me ill...

The Don't-Care-Van

2012-02-06T05:00:00.002-05:00

And I thought school transportation was bad.....

This past Saturday I hosted a get-together of professionals who are interested in advocating for people with disabilities, college graduate students, mentor families, and self-advocates. One of the self-advocates was a woman, Barbara, who appeared to be around 30 years old. She used a hi-tech power wheelchair and a communication board. She typed out what she wanted to say by touching a straw held in her mouth to the keyboard of the communication device. She moved her chair independently though slowly since she had only the slightest movement in one of her hands. She was funny and beautiful and had a wicked sense of humor.

She traveled to my house using a van service in our area called Care-Van. It is operated by our local bus transportation company, and its only purpose is to transport people with disabilities.

Over the years I have heard many nightmare stories about the unreliable service provided by Care-Van, and I had the chance to experience that first hand with Barbara. First, they had a tough time, so they said, finding my house to drop Barbara off. My house is probably one of the easiest houses to find in my city - truly. It is one turn off a main road, and it is easy to figure out which house in the neighborhood is mine because of the prominent wheelchair ramp. But Care-Van claimed they had a tough time finding it. I wonder if they have heard of GPS devices...

Care-Van finally did find my house, and Barbara joined in the fun. When she was dropped off, Barbara had already made arrangements to be picked up three hours later. Sounds simple, right? Apparently not.

Care-Van showed up - same driver - same wheelchair van. Barbara had already started down our ramp heading to the van when the driver appeared to tell her that he couldn't take her because his van was already full. He said he would be back in about an hour....

So Barbara had to work very hard to turn her chair around, get back in the house, and wait another hour. I personally enjoyed the extra time with Barbara, but I could tell she was anxious to get home. She explained that she had booked these travel arrangements well in advance, but that she wasn't surprised because this always happened. She couldn't begin to count the number of times she had been late for work because of Care-Van. And I have heard that from many others.

So, you've got someone, many someones, with disabilities who have a tough time finding employment in the first place, and then because a transportation company can't seem to understand scheduling and travel, the person is at risk of losing their job. And even worse than that to me is that someone like Barbara, who works very hard to have control over things in her life, things which are extremely difficult at best, and she is at the mercy of a transportation provider.

I'll say the same thing I've said about school transportation services - I know it must be a complicated task to schedule the transportation, BUT THIS IS THEIR JOB. It's what they are in business to do. And right now, they are doing a really crappy job....

Really George?

2012-02-03T05:00:00.000-05:00

Here we go again - yet another movie and movie star who feels it necessary to make a joke at the expense of people with intellectual disabilities. Yep, it's the 'R' word AGAIN, this time in an Oscar nominated movie.

The movie is The Descendents,and the movie star is George Clooney. I know he has enough clout in the industry to demand a change in the script. Yet he didn't, so in my book that means he agreed with using the R word as a punch line.

Here is the exact dialogue exchange as taken from the book on which the movie is based, and the movie lines are almost exactly the same:

"Stop it," I yell. "Stop touching each other."

"Whoa," Sid says. "Maybe that's why your wife cheated on you if you're so against touching."

I snap my head around to face him. "Do you get hit a lot?"

He shrugs, "I've had my share."

I face my daughter, "You know you're dating a complete retard. You know that, don't you?"

"My brother's retarded, man." Sid says. "Don't use it in a derogatory way."

"Oh." I don't say anything more hoping he'll interpret my silence as an apology.

"Psych," he says and now kicks the back of my seat. "I don't have a retarded brother!" His little trick is giving him a great amount of amusement. "Speaking of the retarded," he says, "do you ever feel bad for wishing a retarded person or an old person or a disabled person would hurry up? Sometimes I wait for them to cross the street and I'm like, 'Come on already!' but then I feel bad.

So needless to say, I will not be seeing this movie and I will be encouraging others to not see it. I'm sure it has already made a gazillion dollars and may probably win an Oscar, but it won't make my $7.50, and neither will any future movie in which Mr. Clooney participates.

I'm really, really tired of this.

In The News

2012-02-02T05:00:00.000-05:00

Never ever doubt the power of social media and the press! Transplant for Mia now a possibility!

Do you have a child with a shunt? Depending on the particular type of shunt, using an iPad2 might present some problems. Apple iPad2 and Shunts

In the past two years, Ronald Walden has filed 18 lawsuits related to access for a person in a wheelchair just in the medium-sized city in which he lives. While I too experience the problems he mentions on almost a daily basis, I have to question whether lawsuits are the correct response to the problems. I have found that talking to a venue's owner, or mediation, or even just withdrawing patronage can have an impact for change also. There will always be the aggregious cases, or the cases where a proprietor is unwilling to even discuss the matter, but filing a lawsuit for everything??? To me it's a little like the story of the boy who cried wolf. Eventually the boy was ignored... Disability Access Lawsuits on the Rise

Leticia Velasquez is the editor of a new book, A Special Mother Is Born, which gathers the inspiring testimonies of parents who were given bad prenatal diagnoses, or found themselves unexpectedly the parents of a child with special needs. Read an interview with Ms. Velasquez here. (Special note - I have never liked the term 'special' mother/parent/person used to describe parents who have children with disabilities. It's just a personal thing for me. I don't feel special. What I do feel is very, very blessed.)

Special Exposure Wednesday

2012-02-01T05:00:00.000-05:00

Corey made it through Army basic training! Of course, I always knew that he would, and that he would be one of the best in his group! Now it's on to Georgia for an 18 week training....and then, I don't want to think about that right now....

I'm very proud of you, Corey!

A Hot Cup of Coffee

2012-01-31T05:00:00.001-05:00

I so wish that all of Ashley's school years could have been as positive as high school has been for her. I credit Ashley's teacher, Mrs. Marsh, for all the good things that have happened and continue to happen for Ash in school. Here is a link to just one example of those good things (Ashley can be seen close to the end of the video clip):

The Tucker High School Coffee Shop

Thank you, Mrs. Marsh, for caring and for making a difference in Ashley's life and the life of all your other students!

Spokes Rule!

2012-01-30T05:00:00.000-05:00

We traveled to Smithfield, North Carolina this past weekend for Ronnie's wheelchair basketball tournament. The weather was beautiful. The traffic was light. And the Sportable Spokes (Ronnie's team) won two out of their three games!!

Way to go, Spokes!!!

The Glorious Winds of Change!

2012-01-27T05:00:00.001-05:00

History was made in my home state of Virginia yesterday - history that will improve the lives of people with disabilities. Virginia has been ranked 47th out of 50 states in service to people with disabilities. The US Department of Justice believed change was needed and sued the state. A settlement agreement was reached and it marks the beginning a real, substantive change. A huge, huge thank you to all the advocates who made this all possible!

You can find the story all over the national press, but this from CNN sums it up very well:

Washington (CNN) -- In a closely watched case with implications for other states, Virginia reached a broad settlement with the Justice Department Thursday on protecting the legal rights of people with developmental disabilities, both physical and intellectual. The agreement also will resolve violations of the Americans with Disabilities Act.

Virginia agreed to provide an estimated 5,000 citizens with community services that will allow them to live in community-based settings, including family homes, rather than being institutionalized.

The Justice Department's Civil Rights Division is pressing states to comply with a Supreme Court ruling that says the developmentally disabled have a right to receive services in the most integrated settings appropriate to their needs.

Justice officials say the case is particularly relevant to ongoing investigations in Oregon, Florida and Utah. In addition, the Justice Department has issued its findings but not yet reached agreement with officials in New Hampshire, North Carolina and Mississippi.

The Justice Department has reached agreements previously with Georgia and Delaware.

Virginia has allocated $60 million to help integrate the individuals covered, and the federal government will match that with Medicaid waivers, according to Assistant Attorney General Thomas Perez, who announced the settlement.

Perez, an Obama administration appointee, praised Republican Gov. Bob McDonnell and other GOP leaders in Virginia for their cooperation in reaching the agreement. Perez says he is confident the agreement to minimize the institutionalization of individuals will save Virginia money in the long run.

The settlement follows a federal investigation of Virginia's system that found the commonwealth had ADA violations.

And this from Assistant US Attorney General Tomas Perez:

Virginia is a state with strong and committed advocates who have long been pushing for improvement of the Commonwealth’s developmental disabilities system. Throughout our investigation, we met with stakeholders across the Commonwealth, to learn about what is and is not working for people with developmental disabilities. We heard their problems and concer...ns, and ideas for addressing them, as well as their successes. We heard from families who are barely hanging on while their loved ones sit on long waitlists for community services and from self-advocates wanting more opportunities to work and live independently. We heard from the families of persons now living in institutional settings who worry whether the needs of their loved ones can be met in community settings. We also met with some individuals, including some with complex needs, who are being successfully served in the community. Our agreement draws on the input from these critical stakeholders about how to best meet the needs of all Virginians with developmental disabilities. Continued collaboration with and input from these stakeholders will be a critical part of the implementation of the agreement.

Hello, My Name Is....

2012-01-26T05:00:00.000-05:00

An incredible Dad that I know through Facebook published a picture yesterday of a business card he ordered for his severely disabled daughter. Here it is:

We've all dealt with the stares from people who don't understand or are curious about our children with significant needs. According to this dad, Roy:

"The card does two things. There's an icebreaker to remove that awkward feeling when people first meet a disabled person and an easy and private way to learn all they want to know. The website also gives them several ways to stay in touch."

And he provides an example from something he personally experienced:

"At the grocery store there were two young girls who were quite curious about Emma. The mother, however, was embarrassed by her daughters and tried to quiet them. I gave them the card and that's all it took for mom to get on board too."

What do you think of this idea? I'm liking it...a lot. Do you think it might help educate and raise awareness? Would you be comfortable handing out such a card to strangers?

Special Exposure Wednesday

2012-01-25T05:00:00.000-05:00

Cooper is growing at an alarming rate! He has gained an average of 2.5 pounds a week since we brought him home on Christmas Eve. Today he is 12 weeks old!

Here he is the day he joined our family!

Not A Skill Set I Want

2012-01-24T05:00:00.001-05:00

Being the parent of a child with special needs, especially when some of those needs are medical and life threatening, is a difficult job. There is absolutely no doubt that we need help sometimes. We need nursing care for our children – we need specialists like neurologists, gastroenterologists, therapists, and such – we need for our friends to sometimes help ease the burden by bringing us a meal, helping with our other children, or even just being available to lend an ear. But ultimately, the care of our special needs children, as long as they reside in our homes, falls to the parent(s). We have to learn to cope for those times when we don’t have help. We have to know how to survive the long sleepless nights, the lack of time to shower, and how to care for everyone else in the family. And 99.9 percents of the parents of special needs children that I know (and that’s a whole lot) do know how to survive, how to cope when support systems fail. But recently I have met a parent who chooses not to cope without support.

This particular parent is married and has two children – one with special medical needs and one without. This parent has a LOT of support – nurses, grandparents, friends. Neither parent works, yet they live in a nice brick home with a large yard. They are currently working with a contractor to add on to the house. The mother regularly has her hair colored by a professional and has manicures and pedicures very frequently. She has an active social life that doesn’t include her children, and shopping is one of her favorite pastimes. They never lack for food, furniture, or entertainment options.

How does this particular family make all this happen? Primarily through the power of Facebook.

Each day brings a ‘request for prayers’ for a particular need. This morning’s prayer request involved hoping Mom can make it through the day without the nurse who happened to call out sick. Sometimes it’s comments like, “haven’t been shopping in 3 days – going through withdrawal” or “my nails look so bad that I just don’t want to leave the house”. Those comments usually draw someone to meet the need.

Your initial thought might be that I am jealous of this mom. You would be totally wrong. I also lack for very little but it is because I ensure my family’s needs are met. I’m not fond of always having people in my house, be they nurses, therapists or friends who visit unannounced. It’s just not in my nature to ask, ask, ask of others. I am the giver not the taker. And it has never once occurred to me in my life that I had a right to rely on other people to make my life what I want it to be. So no, I am not jealous.

What I am is embarrassed. I can understand when people of a certain political party don’t feel Medicaid and other such programs are necessary if they happen to meet or know this family that I just described. I can understand when politicians say we should rely on friends and our church to help meet our needs and therefore don’t need social programs to help us. Thing is, what this particular family has honed to a fine art is not the norm, is not even close to the norm.

This mom has a skill set that I do not wish to have. I seldom talk about religion, my beliefs or my faith on this blog. But today I am making an exception. Long ago, when I first became an adult and then later a mother, I chose a particular passage of the Bible as my guiding light. It is Proverbs, Chapter 31, verses 10-31.

Look it up and you will understand why the actions of this family and this mother bother me so much.

Falsely Accused?

2012-01-23T05:00:00.000-05:00

I believe one of the biggest fears of parents of children with disabilities is being falsely accused of child abuse or sexual abuse of your child. This is an even bigger worry for parents of children who are non-verbal, or single parents raising children of the opposite sex.

Check out this story posted by Roy Ellis, a father to 11 children - A Dad's Nightmare Over False Sexual Abuse Charges.

I, too, have been accused of child abuse. My now 21 year old daughter honed the art of false accusations. Jessica was (and still is to a degree) a child who would erupt in outbursts of rage and aggression. Although she did frequently and seriously hurt others (she broke two of my ribs during one of her rages), she would hurt herself also. Because of her hemiplegia she has limited use of her left side and during her rages, she would lose her balance and fall. Many times she would go to school or daycare and tell the staff that I was the one who hurt her.

The feeling of having child protective services show up at your door is beyond words. I was fortunate because I had a large support group who could speak to what really happened, and most importantly, child protective services believed my support group and me. But many many parents are not believed.

What about you? Have you had this experience? Has someone put words into the mouth of your child, or witnessed something they didn't understand? Have you been accused and had to defend yourself? How have you survived this?

International Day of Acceptance

2012-01-20T10:00:00.000-05:00

Today is the INTERNATIONAL DAY OF ACCEPTANCE - January 20, 2012

Just what is the International Day of Acceptance? It is a day to achieve social acceptance of disability and to honor the late Annie Hopkins, founder of 3E Love and creator of the International Symbol of Acceptance.

3E Love is a social entrepreneurial awareness experiment.

Join the movement at
http://www.dayofacceptance.com

Wear your heart on your sleeve on January 20th.

Tell the world you embrace who you are; a person with social rights, who has an opinion, who has interests, who has goals and who loves life; a person who is empowered to make a difference in the world and not be without a voice in society. You are not living disabled, you are living.

To our supporters: Join us in telling the world that you are accepting of people with disabilities. As our parents, siblings, relatives, spouses, children, lovers, coworkers, teachers, personal assistants, friends, and anyone else - you also have a role in our culture and life. And you can have an impact on the future if you demonstrate your acceptance to others.

Let's join together to:
Embrace diversity. Educate your community. Empower each other. Love life.

Start the conversation of acceptance on January 20th with the International Symbol of Acceptance: Wear a t-shirt. A sweater. A hoodie. Use a bag. Pin a button to your jacket, chair strap or backpack. Ink a temporary tattoo onto your hand. Draw it on if you have to! Ask your friends to join us as well. And for a final touch change your profile picture on Facebook to the symbol. Get people talking!

When a person asks about the symbol, "What's that mean?" Well now it's your turn to tell them your story or what its significance is to you.

And maybe next time they will look at the antiquated traditional symbol a little differently......

Join the movement at
http://www.dayofacceptance.com

Not Wimpy At All

2012-01-20T05:00:00.000-05:00

This is a company that 'gets it'! Makes me want to move to South Africa!

Have a wonderful weekend!

Wheelz

2012-01-19T05:00:00.000-05:00

This has got to be one of the coolest kids I have ever seen! Funny thing, I could easily superimpose Ronnie's face over this kid's face because I can see Ronnie begin driven in exactly the same way. I'm just hoping Ronnie doesn't visit my blog today because I am not ready for a heart attack!

Arline

2012-01-18T05:00:00.000-05:00

I found this video on Dave Hingsburger's blog, Rolling Around In My Head, and knew after the first few stanzas of the song that I also had to post it. Legislators in my state are very slow to address institutionlization even as the Justice Department threatens a lawsuit. Perhaps I should email this video to all the esteemed ladies and gentleman who purport to speak for all Virginians.

Listen very carefully to the words, and then say a prayer that one day there will be no more institutions...

Knowing The Difference

2012-01-17T05:00:00.001-05:00

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

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

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

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

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

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

Hard Work

2012-01-16T07:54:00.003-05:00

Cooper BEFORE puppy training class....

Cooper AFTER puppy training class...!!!!

Prepare to be VERY Angry

2012-01-14T08:09:00.006-05:00

CAN.THIS.REALLY.BE.HAPPENING???

I know we all have issues with society's acceptance of our children, but THIS - THIS???

As a community of parents who have children with disabilities, we must NOT accept this. We must mobilize - make calls - write letters - contact the press - WHATEVER IT TAKES!!! Here is the hospital's phone number: 215-590-1000.

No transplant because Amelia is mentally retarded

And here is a link to a petition to sign. Please do it today!

TGIF!

2012-01-13T05:00:00.000-05:00

A Challenge For You

2012-01-12T05:00:00.001-05:00

The video below has been making the rounds of Facebook the last couple of days, and it is absolutely wonderful. Maddox and her Mom say so much without uttering a word. And through their efforts, more and more people may come away with a new understanding, a new acceptance, a new view.

So here's my challenge. I think all of us parents of children with disabilities need to produce a similar message - be it through video or pictures. Let's begin to educate others in ways that we haven't used before. Let's grab the attention of this generation of Facebookers/Bloggers/YouTubers/and Tweeters. I know we have all blogged and tweated our stories, but let's see if we can increase our audiences and include people whose lives have yet to be touched by disability. Let's model it after Maddox's message and create a library of information for the digital world. Let's use the tools that the world is using, and let's spread our message of understanding and acceptance.

I would be glad to coordinate the effort, help compile the library, and then market our stories to people who need to see them. What do you say??

Special Exposure Wednesday

2012-01-11T05:00:00.000-05:00

Ronnie is enjoying his birthday breakfast from McDonalds! Happy 17th, son!

Speaking of Group Homes

2012-01-10T05:00:00.000-05:00

Almost every weekend, during outings with my family, I am asked if I run a group home. I guess it's understandable. My kids are almost all adults now - ages 21, 21,19, 17 and 16 - and other than Chip, my birth child, none of them look like me. In fact, none of them look like each other. Corey is Native American, Jessica is Latino, Ronnie is African American, and Ashley is of Italian heritage. Chip and I sport a blond, German look.

The first time I heard it, it bothered me, though I couldn't say why. Then I started thinking that if folks thought treating young soon-to-be adults with respect, love and caring was what group homes did, I shouldn't disavow them of that notion.

Of course, my years of experience with group homes is anything but what I just described. See Monday's post. But I want people to expect and believe that group homes can provide a positive, loving environment for people with disabilities. I want neighbors not to worry when a group home is planned for their neighborhood. I want families to feel peace when their loved one makes the decision to move into a group home. And most importantly, I want people with disabilities to be happy living in a group home, ensured of their safety, in a warm caring environment that is bright and sunny and clean. And I intend to make that happen.

I'm only a few years away from retirement from my career government job. When I do retire, I plan to transform my current, handicapped accessible home into a group home and prove that it can be done the way I described. I don't think it will be easy, but I think it will be worth the effort.

What do you think?

I Want The Truth

2012-01-09T05:00:00.000-05:00

I got the call from the school nurse at 2:15pm Friday. They told me Jessica was on her way to the hospital in an ambulance. And here's the reason they gave me:

Jessica was late getting to school on Friday. Once there she was very, very, very sleepy - so sleepy that she fell asleep in the restroom, and started choking at lunch because she fell asleep while eating. The teacher had a rough time rousing her. During one of her awake periods, Jessica said she had gone to the dentist that morning and the dentist gave her medicine.

Thing is - Jessica did not have a dentist appointment, and to top it off, Jessica doesn't make up stories. Never has. Never tells a lie. Her brain is just not wired that way. Her teachers in elementary and middle school found it impossible for her to concoct a story for reading class even when she was given the start of the story. She has never engaged in imaginative play. She does, however, repeat verbatim things that people tell her.

I was told that Jessica's group home manager was following the ambulance to the hospital, and I told the school I was headed there also. Since I was at work downtown, it would take me about 20 minutes to get to the hospital. When I arrived, there was no group home staff anywhere to be found, and no one had been there.

Jessica was indeed sleepy. She barely opened her eyes to tell me hi and then she nodded off again. Usually a person that requires four strong men to hold her down for a blood draw, she didn't even whimper when the nurse stuck her. This definitely was not Jessica....

I continued to try tracking down the group home manager. We needed answers to questions about how Jessica's previous night had gone, what had happened before school, and if anyone else at the group home was sick. But I couldn't get her. Finally a strange man popped into the room and said he was a group home staff member. But, he had no answers to our questions.

The ER doc had a cat scan done. I was worried that Jessica's shunt may be failing, although her symptoms really didn't support that. The cat scan agreed - it was not a shunt issue. Fortunately, the ER doc astutely ordered a tox screen - a test to check just what Jessica may have been given or ingested.

Apparently, she was either given too much of her meds, or she was given meds that belonged to another group home resident. But the group home staff refused to accept that. They said she was fine and they had no idea what the doctor was talking about.

Jessica was finally discharged, and I have left a message for the director of the company to contact me. Although I am sure there is no written record of the extra meds, just the fact that someone told Jessica to say she went to the dentist convinces me that the person knew something wrong had occurred.

I'm not sure where all this is going to go, but I will keep you posted...

Pressure Building

2012-01-06T05:00:00.000-05:00

Peer pressure is like a nasty virus that you just can’t get rid of. Chip, Corey, Jessica and Ashley are free thinkers and have never really had any major problems with peer pressure. But Ronnie is a different story. He seems to let it drive his every choice and decision.

On the first day back to school after the holidays, I mentioned to him that his backpack was a mess, stuffed full of old papers and ‘junk’. He said that everyone else’s was like that also.

During the holidays, he asked for a set of headphones for his iPhone. I looked at him as if he had lost his mind, and he just said that his friend at school had them. I gently reminded him that he was Deaf. He said his friend didn’t hear well either. I gently reminded him again that he was DEAF! He didn’t seem to care – all that mattered was that he looked like his classmates who have headphones attached to them at all times.

Those are two minor examples, but I am currently dealing with something more disturbing. Apparently one of Ronnie’s ‘friends’ told him that he shouldn’t eat too much or otherwise he would get fat. Since that comments, getting Ronnie to eat anything has been challenging.

Ronnie is a skinny kid, and he is very active. In addition, his disabilities require that he eat a healthy and very specific diet. He has always been a junk food junkie but I was slowly making inroads into healthier eating habits for him until….

I know, or at least think I know, that being a kid in a wheelchair, who can’t walk, who is Deaf, who must rely on medical interventions for even the most basic of bodily functions can’t be a fun state of affairs. I try really hard to be sensitive to that, and as with all my children, make sure that he takes part in activities that reinforce his abilities rather than his disabilities.

And the last thing I need is some other kid telling him to stop eating!

So what would you do? How would you convince him that not eating is not an option, and even more, how would you help him move past the whole peer pressure thing?

Costs Adding Up

2012-01-05T05:00:00.000-05:00

Is it just my imagination or is Medicaid paying for fewer and fewer medicines these days? I know that each state administers Medicaid differently, but I have been surprised over the last 6 months or so at denial of medication payments. And these are meds that previously were paid for.

Because my children with the most significant special needs were adopted, they have automatically received Medicaid coverage. I have also added them to my work insurance policy, but it pays for very little. And, Ashley has reached her lifetime maximum under my work policy. So we rely very, very heavily on Medicaid to cover any medical expenses.

First it was one of Ashley’s medications, then another. Then this month alone, two of Ronnie’s which had previously been covered were denied. So far, the cost of those denied meds hasn’t been excessive if you look at them individually. But, when you start adding them all together, the budget takes quite a hit – a hit which will be repeated every single month.

I’m not sure if there is any sort of appeal process to get the medications covered again, but based on my past experience appealing another Medicaid-denied service, the process is difficult at best. And last night, well past 9pm, when I was at the pharmacy and the pharmacist was on the phone with the Medicaid office, there seems to be very little interest on my state’s part at even addressing this issue.

You know, this past summer, I worked really hard with Ashley to discontinue two of her medications. Perhaps that was a good thing considering this new lack of coverage. But, there are some meds, seizure meds for example, or life-sustaining kidney meds, that we just can’t discontinue.

One would think that between two insurance policies I could get medicines at least partially paid for, but that is not looking to be the case.

Special Exposure Wednesday

2012-01-04T08:44:00.004-05:00

Corey, my handsome soldier boy - also a little bit scary with that big gun!!

Light My Fire

2012-01-03T05:00:00.000-05:00

OK, I'm about to step back on my soapbox again. Let's talk a bit about the sexist attitudes of some restaurant owners and in addition, the complete disregard for wheelchair users at those same restaurants.

My younger kids were back in school today, but I had another day before having to go back to work. Chip is still on college break, so he and I decided to try a new restaurant near where we live. The name of the restaurant is Halligan's, and the one near us is actually the second one of these restaurants. The first Halligan's opened in our city's downtown area back in 2008, but the one we visited opened just a month ago.

The Halligan's website states that they, "capture the essence and mystique of what it truly means to be in the fire service. The restaurant is a virtual museum and tribute to past and present firefighters of all jurisdictions. We have accomplished this by creating an atmosphere that is comfortable to all members of the fire service as well as an awe inspiring ambience for the general public."

Further, the website introduces the owner as a current county firefighter, someone with 20 years of service who decided in 2008 to open his first restaurant. Sounds like a good plan if you believe the rumors often heard of firefighters being great cooks. And the food we had at lunch today was really good, some of the best I have had recently. I just wish two other very important aspects of the restaurant were not so bad.

First, what do I mean about sexist? Well, if I were a female firefighter I believe I would have a problem with the female serving staff dressing in barely-cover-the-butt khaki skirts. Everyone working in the restaurant dresses in an interpretation of firefighter uniforms. Everyone that is not female wears khaki pants, blue teeshirts, and red suspenders. But if you are female, you wear the microskirt, a tight teeshirt and the red suspenders. Yes, it's a bar, but still, the owner doesn't have his male servers in tight pants and even tighter teeshirts. Again, if I were a female firefighter, I don't think I would choose to support the restaurant.

Secondly, there was a complete disregard for the accommodation of wheelchair users. Every, and I mean EVERY table in the place was a high bar-style table. Absolutely impossible for a wheelchair user to sit at and eat or drink. I asked the server about the tables, and she said that the owner "didn't think about that until some patrons showed up in wheelchairs."

Really...you've been a firefighter for 20 years...a firefighter that more than likely had to help people with disabilities over the years, and you didn't think about that when opening your restaurant??? Or just discount the fact that you are a firefighter. How can anyone open any sort of establishment these days and not think about people with disabilities? It boggles the mind.

And one more question - did the building inspector not notice the lack of accessibility, or is it not their job to notice such things?

So Halligan's, dress your servers appropriately and remember that not everyone can lift themselves into a three foot high stool. You know, looking at your picture, Mr. Owner, and seeing you in the restaurant today, you might yourself be looking at disability in the near future. What then? Will you finally provide a welcoming establishment for all people?

Reality Check

2012-01-02T05:00:00.001-05:00

Well, my precious two week vacation has drawn to a close. The kid's backpacks are ready, and the lunches have been packed. Our lives are back to the school and work routine tomorrow, and I have to admit that I am sad about that.

We had a wonderful holiday break. We visited museums - did some shopping - had family join us for Christmas celebrations - and played with our newest family member, Cooper.

We checked off four doctor appointments, and we ate way too much food that wasn't healthy. I cleaned the house after all the decorations were moved back to the attic, and Chip and I even got a few projects done around the house.

My only complaint about the holiday break was that it was way too warm. I want cold weather, even snow and ice, for Christmas, but this year we had 65 degrees and ceiling fans running on Christmas morning.

All in all, it was a wonderful time! I hope that you and your families also enjoyed yourselves, and that Santa brought you what you asked for!

Now, I'll start turning on my alarm clock again and braving the morning rush hour! How many days until my next day off....????

The Bright White Light

2011-12-29T07:45:00.003-05:00

Ben died on Christmas night. Prior to his death, he asked, "Do you believe in angels or God?" If not, your mind may be changed after viewing this video:

Sick teen's video goes viral after his death.

Can You Hear Me Now? NO!

2011-12-27T08:30:00.002-05:00

One of the activities my family has always enjoyed around the holidays is going to movies. It's the time of year that new movies are released, especially family movies. But because we live in an area that ignores the needs, wants and rights of people who are deaf or hearing-impaired, we no longer get to enjoy one of our favorite activities.

Two theaters in our area play ONE captioned movie at a time. One of those theaters is about 15 miles away and the other is about 25 miles away. During this winter break from school, the theaters are not playing captioned family movies. And, both theaters play the same movie.

So, we are left with the choice of taking Ashley and Ronnie to a movie that is not captioned or not going to the movies at all. We usually always choose the latter option.

Come on, Regal Theaters, you have the monopoly in our area. Would it be so difficult to show a couple of movies on more than two screens?

All Is Revealed!

2011-12-24T15:48:00.005-05:00

Here he is - the newest addition to the family! COOPER! Cooper is a yellow lab who is seven weeks old. He is also just about the cutest thing ever!

I hope you all have a very Merry Christmas!!!

Holiday Outings

2011-12-23T10:00:00.003-05:00

Ashley loves the carwash. Don't tell me I don't know how to show my children a good time!

TODAY'S CLUE: Two of you have guessed correctly! All will be revealed with pictures tomorrow!

Orange? Blue? Hot Pink?

2011-12-22T07:46:00.002-05:00

Are there really other people in the world besides Ashley who would want an orange Christmas tree????

TODAY'S CLUE: One last clue and then all will be revealed on Saturday!

I think I've bought way too many toys!

On To The Moon!

2011-12-21T05:00:00.000-05:00

Tuesday we visited our local science museum. We have a family membership primarily because it gets up free admission to our museum but also to hundreds of others across the country. We used it a lot last summer around our state. It really is the best $100 I have ever spent!

Here is my astronaut in training, Miss Ashley! Look closely and you can see her head in the helmet...

TODAY'S CLUE: I had no idea how much daycare cost until I visited one today for a tour!

(The guesses that have come in are good, but not quite correct yet...keep trying!)

Channeling Jack Kerouac

2011-12-20T08:12:00.004-05:00

Recently Ashley has been in a 'black' mood - wanting to wear black all the time. I have no idea why, but at bedtime last night, she was looking like a beatnik, interpretive dancer stuck on Sesame Street!

TODAY'S CLUE - We'll start with a small room but it will be easy to expand over time.

(If you have no idea what this clue thing is about, check Monday's post.)

Spider Man

2011-12-19T07:05:00.003-05:00

Today begins the first day of my two week vacation! TWO WEEKS! The last time I had two weeks off from work was for maternity leave for my oldest son, Chip. Chip is now 21 years old!

My posting schedule may be a little off these two weeks, but I am going to try to document these historic two weeks through pictures. And, I have a major announcement coming later this week!

First - the picture. Ronnie and some members of his wheelchair basketball team went rock climbing this past Saturday. It was so exciting to see the boys and one girl pull themselves up with arm strength only. They did this last year, but this year they were much faster! And then secondly - I will provide a clue about my announcement at the end of each post. If you think you know what the announcement is, email me. But, your guesses have to be very specific!

TODAY'S CLUE - I first met Ashley in December...Jessica and Corey joined our family in December....and I first heard about Ronnie in December.

Just and Loving?

2011-12-16T05:00:00.000-05:00

It’s tough to ‘keep the faith’ when one experiences a lot of negative things in their life. And often it seems like the negative things just keep piling up and up. You know, the thought that a lot, if not most, believers have at some point in their lives – ‘Why does God let bad things happen to good people?’

When I have had those moments, I tell myself to just trust that all that is happening is part of God’s plan and to just believe that there is a purpose to the turmoil. But, it gets very hard to remember and believe that when the bad things happen to an innocent child, and especially hard when bad things continue to happen over and over again through no action of that child.

For instance, children like mine and others with severe disabilities did not ask to be born they way they were. It was through the actions of their birth parents – drinking, drugs, no prenatal care, etc. – that their lives were determined. Innocent children who had no say in their future…

I can perhaps accept that at some spiritual level by going back to having faith when it seems God has a plan. What I can’t accept is when bad things continue to happen to these innocent children. Wasn’t it enough they were born with their disabilities – why must they be afflicted with other negative things beyond their control?

For example, these vulnerable children are subject to stares, bullying, exclusion and a host of other actions by people who ridicule them or think of them as less than ‘normal’. The parents of the children must battle every step of the way to ensure their children receive appropriate educations when teachers often ignore or exclude them, or just don’t believe they have any ability to learn. Or, there are the professionals (and that term is used loosely) who insist you prove over and over that your child really does have a disability, disabilities like deafness or blindness that seem nothing if not obvious. These children have to endure bus drivers and aides who treat them like animals, people who equate a physical disability with a decreased capacity to learn and understand, and neighbors and sometimes extended family members who act as if that child has something contagious. People speak about these children, not to them. They support them without befriending them. They suggest interventions and treatments to ‘cure’ them or make them more ‘normal’. They are very often treated less like human beings and more like creatures to be contained, trained, and locked away.

This is where my faith begins to crumble. It’s like kicking someone when they are down. These children bear enough of a burden from their disabilities – why must they further bear the burden of cruel or unenlightened people? Why does a merciful loving God allow that to happen, and especially allow it to happen over and over again?

These thoughts have invaded my mind even more now that Christmas and an increased spiritual environment are upon us. I don’t have any answers and I wish I did. I wish my faith was enough to relax my soul, but it’s not. I wish, no, dream, for a blast of positive into the lives of children who have lived primarily in the negative.

I want to believe in a God that can turn all this around – I really do.

Someone to Pinky Swear With

2011-12-15T05:00:00.000-05:00

I have such fond memories of growing up and spending endless hours with my friends. We would play with our Barbie dolls, or build forts in the swamp behind our houses, or ride our bikes and skate. As we became teenagers, we would giggle about boys, try out makeup, and pull all the clothes out of our closets trying to find the exact right outfit for the school dance. My childhood was defined by those friendships, and by the passages through time that we shared.

But my beautiful daughter, Ashley, has never had and probably never will have similar experiences.

I have tried to encourage friendships between Ashley and her non-disabled peers, and often even other disabled peers. But those friendships never happen. A very few times, I would find a peer with a heart that wanted and tried to be a friend, but it never lasted. The lure of typical peers and typical activities would always win over communication difficulties, medical difficulties, and often limited responses from Ashley.

Ashley has never been invited to a birthday party or a sleepover. The only times she goes shopping at the mall is if we, her family, take her. She doesn’t talk or text on a phone, and she doesn’t share clothes or dreams with girlfriends. She has never been to a school dance or a school football game. She doesn’t have Facebook ‘friends’, and her teachers may refer to her ‘friends’ at school, but really they are not.

I don’t know how to facilitate those friendships. I don’t know how to create situations where friendships, lasting friendships, can happen naturally. And all that makes me very sad.

What about the others of you who have children with significant disabilities? Do your children have friends? How has that come about? And by friends, I don’t mean people who take pity on our children or view them as a ‘service project. I mean real friends. Friends like Paige, Rusty, and Diane from my past…

Someone please convince me that there is still hope.

Special Exposure Wednesday

2011-12-14T05:00:00.000-05:00

The reason for the season...

Spenser and Dayton

2011-12-13T05:00:00.000-05:00

Want to read something to make your day? Want to feel the joy of true inclusion? Want to be inspired by someone who feels he is too young to be an inspiration?

Check out this story and also make sure to watch the video at the end of the story. It will make your day!!

Do It Right....Or Else

2011-12-12T05:00:00.000-05:00

Just when I thought I only had one school bus battle to fight, another rears its ugly head.

Now what, you ask? Well, for the last three days of last week, Ronnie had what we thought was a substitute bus driver and aide. I did find out late Friday afternoon that they are not substitutes - they are the new staff for his bus.

Apparently, the bus driver is 'new' as Central Office told me. And that newness is certainly apparent since she can't drive the friggin' bus!!

We have a nice long, wide paved driveway. Every bus for the last 14 years has been able to stop at the end of the driveway in such a way that the wheelchair lift can be set down with no problems. Ms. new bus driver, however, can't seem to do that. Last Wednesday, Thursday and Friday, she either overshot or undershot the driveway. That wouldn't be too terrible if we didn't have deep ditches on either side of the driveway!!

All three days, the wheelchair lift was lowered into the ditch and the bus aide just stood by and watched as Ronnie struggled to get to level ground in his chair. Fortunately Chip was out of college and met Ronnie's bus and was able to help him.

I called the main transportation office and they said they "would talk to her." Wonder how things will go today? I'm going to leave work early just so I can be home when his bus arrives. If the driver doesn't make it safe for him to exit the bus, I'm going to be very, very angry and make a scene...

Stay posted for an update tomorrow!

Just The Way You Are

2011-12-09T05:00:00.000-05:00

This is dedicated to my beautiful Ashley...I will always love you just the way you are!

Bus Discrimination

2011-12-08T05:00:00.000-05:00

I wonder how many hours I've spent over the last 15 years working on school transportation issues for my kids? I'm sure it would be a large number. Just earlier this year, working through one, what seemed like a relatively simple transportation issue, involved 6 people from the school district and resulted in 62 emails before the issue was resolved.

And here we go again...

Ronnie will be 17 years old in a month. He is a junior in high school. He rides what my school district lovingly calls "special transportation" only because he uses a wheelchair and cannot be accommodated on "regular transportation."

Kids that ride regular transportation usually have to walk a block or two to catch the school bus in the morning and then to return home in the afternoon. There is no door-to-door regular transportation. The doors of the regular transportation busses open up, the kids exit, and once they are out of the street, the bus driver goes on his/her merry way. Of course, the parents of elementary age students often wait at the bus stop for their children, but middle and high school students find their own way home every day.

So, when Ronnie and I decided that it would be ok for him to exit his bus, door-to-door transportation because it is "special" and not "regular", and find his way to the end of the driveway and up our ramp into the house, we didn't expect any problems from the bus driver or aide. He needs no assistance pushing his chair, and he had never once forgotten where the ramp and the door are. In fact, during the summer, he actually goes half a block, BY HIMSELF, to our neighborhood pool.

But apparently we were wrong. The bus driver refused to leave the street in front of our home until she 'saw' me or my oldest son there.

I tried explaining that this level of independence was something Ronnie would need as he transitioned from school to the work force. I tried explaining that he was perfectly capable of getting himself into the house. I even explained that someone was always at home waiting for him, but we wanted him to get used to being more self-sufficient. But to no avail...

This seems a touch discriminatory to me. Students without physical disabilities do not need parental escorts into the house at the end of each school day. So why should Ronnie?

Want to take any bets on how many emails it will take to resolve this issue???

Special Exposure Wednesday

2011-12-07T05:00:00.000-05:00

I love the colors of Christmas! Great picture, Chip!

Doctor? I Wonder...

2011-12-06T05:00:00.001-05:00

MALPRACTICE - failure of a professional person, as a physician or lawyer, to render proper services through reprehensible ignorance or negligence or through criminal intent, especially when injury or loss follows.

Brooke, the daughter of one of my best friends, recently switched from having a G-tube to having a GJ-tube. For several months, Brooke had been experiencing a great deal of pain whenever she was fed. The doctors did a lot of testing but couldn't come up with a reason for the pain. Their solution was to switch to the GJ-tube.

It sounded like an ok idea, and Brooke does have much less pain using it over the G-tube. But, it comes with a major problem - it gets clogged a LOT. And unlike with a G-tube, a parent or caregiver can't change it. Changing the GJ-rube requires a trip to the hospital or medical office for a radiologist to change it and make sure it is positioned correctly.

Seeing as the tube gets clogged almost weekly, that is a huge headache, and not to mention, lots of time off from work for Brooke's Mom (unpaid time off which for a single mom is devastating.) But if it makes life better for Brooke, her mom is all for it.

So what's the problem? Well, this past Sunday, the tube became clogged again. But a call to the GI doc provided bad news. He and the radiologist were not going to come in on Sunday to change the tube, and Brooke would just have to wait until Monday. But since ALL Brooke's nutrition and fluids are given via that tube, that meant she would quickly become dehydrated or Brooke's mom would have to use the G-tube part and cause Brooke to experience the pain again.

To say this infuriated Brooke's Mom and the rest of us who know and love this lovely little family would be an understatement. If a doctor chooses to treat children with significant needs, and further if that doctor is the one who recommended the GJ-tube, then his job is 24/7. If he wants time off, he makes arrangements for other doctors to back him up. I still find it almost incomprehensible that this happened.

We parents of children with significant medical needs must rely on the medical community to keep our children alive and healthy. So much is beyond our control, and that is a horrible feeling just knowing that we can't make it better.

I, for one, consider this malpractice...just saying....

Stay Strong, Jonah

2011-12-05T05:00:00.000-05:00

Tell Me What's Right While Doing What's Wrong

2011-12-02T05:00:00.000-05:00

Ahh, high school. Those years when teachers and staff try to mold young minds for the challenges of the future. A time of showing the difference between right and wrong. A time to hopefully build some compassion, some sense of justice, and to learn to live together peacefully.

Yea right...

What high school should not be, in my opinion, is preaching with a "do what I say not what I do" attitude. Yet it happens in ways both small and large. We have high school coaches videotaping naked girls in the locker rooms. We have female teachers having sex with young male students. We have school personnel being arrested for embezzlement. And we have this - arguably not as significant as the other things I just listed, but still showing a careless regard for both the law and the rights of others:

Mr. school employee/door repairman, you took the last handicapped-accessible parking space. No, you did not have the handicapped placard that gives you the right to park there. But yes, it was right in front of the building where you had to fix a sticky door. And yes, it saved you from toting your bag of tools (no bigger than a student's backpack) across the parking lot. But it meant my child had to get out of my car and into his wheelchair in that busy parking lot.

Thanks for making his life more difficult and less safe. And thanks for the wonderful message you sent to the other students at school. I'm sure that those students won't feel much remorse when they park in a handicapped spot. You showed them today that it is alright...

Take Me Away

2011-12-01T05:00:00.000-05:00

I've always loved traveling. Whether it was for a camping trip at the beach or a plane trip to Florida or a cruise through the Caribbean, as a young adult I could plan vacations at the drop of a hat. All that changed though once I had children with special needs.

Since I first adopted Ashley and until now, the biggest trip we have ever taken was to Disney World in Florida. And that was all planned out by the Make A Wish Foundation. They arranged for all our needs, including anything related to accessibility. Now that I am on my own for arranging vacations, and now that I have two children in wheelchairs, I'm just overwhelmed and can't seem to make anything actually happen.

We have made some trips to a rented house in the Outer Banks of North Carolina, but even then we have to make sure we find an accessible house, and I have to have names and phone numbers for medical professionals and pharmacies in the area. I want to be able to plan something bigger - a trip to a far away destination - a place none of us have ever been to but have always wanted to see.

I found a website that may be able to help with the planning. It's called TravelinWheels, and it's tag line states, "Encouraging Disability Travel Around the Globe." There's lots of information on the site and even reviews about different locations. What I would like to know if whether or not any of you have ever used TravelinWheels or a similar service for planning a vacation? If not, what have you done on your own to ensure a fun and accessible vacation for yourself and/or your family?

Have you found locations that are more accepting and accessible than most? Do you have lists of places a person in a wheelchair should definitely avoid? And, if you have gone of vacations and needed the services of an interpreter or medical professionals, what have your experiences been finding those people?

Please share!

Special Exposure Wednesday

2011-11-30T05:00:00.000-05:00

I have a new obsession - like I really needed a new obsession - and it is a wonderful way to lose hours, maybe even days without even getting drunk. That obsession is pinterest.com.

One of the many things I 'pinned' to my boards, and then decided to actually try was the tomato cage Christmas tree.

I took one of our cages, turned it upside down, used a twist tie to connect the legs into a point, and it already looked like a tree. Then I wrapped it in miniature Christmas lights, and I LOVE the result! I may even have to make a tomato cage tree forest now!

Here's a close up to prove it really is a tomato cage:

And here is the finished product:

A Market Only For Some

2011-11-29T05:00:00.003-05:00

Ahhh, Black Friday - that time when we witness both the worst and the best in people. And sometimes, the worst and the best of accessibility. Just trying to move among the crowds with two children in wheelchairs is challenging. I really don't need retailers to do things that make it even more challenging, but it seems that is what I find every year.

In fact, two years ago, we tried to shop at a store named World Market. We couldn't get into the store. Here is why:

The ONLY curb cut anywhere near the store is just to the right of the front of the store. One might assume that you could then turn left after going up the curb cut and proceed to the front door of the store. But no....

There is a street sign between the store front column and the curb, completely blocking the sidewalk. Our second attempt to enter involved going behind the column to get to the front door. Nope...didn't work either because the store used that to contain extra merchandise boxes.

We were completely and totally excluded from the store.

After taking everyone back to our car, I went into the store to mention the problem to the store manager. To put it nicely, he didn't seem too interested at that point. Several months after the rush of Black Friday, I went back to the store and mentioned the problem to an assistant manager, an assistant manager who assured me they didn't want to exclude anyone from their store. That was well over a year ago.

So, we tried again this year. EXACT SAME PROBLEM!

You know, one of the TV news channels in my area posts pictures of people who are arrested each week. I wonder if they would be interested in posting pictures like this one of World Market and other establishments who limit access???

What About The Leftovers?

2011-11-28T05:00:00.000-05:00

Leftovers – lots of leftovers – turkey, gravy, yams, stuffing, green beans, rolls. One of the best things about Thanksgiving dinner is having leftovers for the next few days. One of my favorites is a hot turkey sandwich – leftover turkey piled high on leftover yeast rolls and then covered in leftover gravy. After a few days, we are driven to get creative with the leftovers, but to me, they are still just as good.

Did you know that a lot of the children in foster care, children waiting for a family to call their own, feel like leftovers? They have watched their friends and sometimes their family members get adopted, but they still wait. The feel like the leftovers that everyone has grown tired of.

But just as we get creative with our Thanksgiving leftovers, we can get creative with the children who wait for a forever family. It’s certainly not going to be easy to bring a teenager into your family, a teenager who has been rejected so many times that he will try to reject you. It’s not easy to bring the group of three siblings home to your quiet, clean house, but trust me, they won’t have much to bring with them to mess up your house. Or the child with significant disabilities that is spending her life in an institutional setting – all she wants, even if she can’t verbalize it, is to wake each morning with the knowledge that she is loved and wanted.

As National Adoption Awareness Month draws to a close, I implore you to examine your lives closely and see if there is any way possible that you can bring home a child who believes he is a leftover that no one wants.

Happy Thanksgiving!

2011-11-24T05:00:00.000-05:00

I have so many things to be thankful for today and everyday - including this cute little turkey!

Happy Thanksgiving everyone!

Special Exposure Wednesday

2011-11-23T05:00:00.000-05:00

This day before Thanksgiving, I am very thankful for Chip and the fact that he went out in the rain to cook me a steak on the grill!

Thankful for Mr. Ralph

2011-11-22T05:00:00.000-05:00

I'm thankful for many things during this holiday season - things both big and small. And, one of those things is that Ashley's morning school bus pickup has been changed.

For the first two years of high school, Ashley had a wonderful bus driver named Mr. Ralph. Mr. Ralph is a man of few words, but a man with eyes that reveal his inner heart of gold. He seldom smiles, but you could tell that he liked Ashley. He made many suggestions about how to make her bus ride more pleasant, and he rearranged his pickup schedule so I could make it to work on time.

But this year, even though Ashley was going to the same school, her bus driver and schedule changed, and since the start of school in September, I have been late to work every single day. I've learned though that trying to make a bus change at the start of the school year just doesn't work. The transporation office staff is stressed to the max, and can be downright rude sometimes. So, I let things go for a while.

I did finally call a few weeks back and asked if Ashley could be an earlier pickup. I didn't ask to change the bus or the driver, just that she be one of the first pickups instead of the last. This time the transportation office staff was more relaxed and worked hard to help me.

Instead of a shuffle of pickups for her original bus, they decided to change her bus, and lo and behold, it was back to Mr. Ralph's bus! Ashley and I were both so excited to see him the first day, and happy that his unsmiling face but warm eyes will be what she sees each morning.

AND....And...I made it to work on time finally! Both my boss and I are thankful for that!!

"I Don't Want Pity"

2011-11-21T05:00:00.000-05:00

We parents of children with disabilities spend a lot of time talking and writing about the lack of accessibility and accommodations for our children. I know that at times I have gotten down right angry when, for example, non-disabled movie-goers use the handicapped seating at the theater or when I can't find a close parking spot. But compared to some people in Africa, what we experience seems like nothing more than a mild annoyance.

The subject of disability in Africa is not often discussed in the media, but a new documentary film aims to address this.

The film, Body and Soul, was shot in Mozambique's capital Maputo and follows the day-to-day lives of three young disabled people.

It reveals the challenges and discrimination they face - some children in Mozambique are not sent to school for example - but also reveals the strength and determination of each of the film's main characters.

Check out this link for the movie trailer, but be sure to have some tissues handy. Trust me, you will need them.

See What I'm Saying

2011-11-18T05:00:00.000-05:00

I spent almost an hour reading articles from the New York Times about abuse in group homes. I had thought about sharing those with you, but decided that for Friday, I needed something more uplifting, something that wouldn't make me cry. So here is the music video for the movie See What I'm Saying. I really, really want to see the movie...

Boy Talk

2011-11-17T05:00:00.000-05:00

Sensitive subject warning…If talk of sexuality and teenagers bothers you, stop reading now. However, if you are the parent of a boy with spina bifida, or are an adult male with spina bifida, please keep reading and offer some suggestions.

Where I could, I always approached the subject of sexuality with my children in a very open and honest fashion. I started early, used an age-appropriate technique, and tried very hard to make sure my children learned what they needed to know from me and not from less reliable sources. But when it comes to Ronnie, that has been difficult.

I don’t know what, if anything, he was taught before he joined my family. He was 14 years old when he joined us, so someone should have really approached the subject previously. But I don’t know if that happened or not. I have no problem starting from the beginning with him on the subject, but honestly, I’m not sure how to proceed given his spina bifida.

Ronnie is in a wheelchair. He uses catheters to empty his bladder and a cecostomy for bowel control. So what does that mean in the world of sexual function? Will he be able to maintain an erection? Will he ejaculate? Will he be able to father children?

I need someone who can help answer those questions and who can help me make Ronnie understand the answers. Would that person be his urologist? I can’t think of anyone else to ask, so this is where I really need your help. Please feel free to email me privately (email is on the right of the page) if you are uncomfortable leaving a comment.

Ronnie is a very caring, very loving person, and a boy who definitely is very interested in girls. He needs some answers, and eventually the life partner he chooses will need to understand the answers also.

And I need to start now to help him find those answers…

Special Exposure Wednesday

2011-11-16T05:00:00.000-05:00

It's amazing how big a ripple a small pebble can make...and I'm not talking about the lake...

Beautiful picture, Chip!

Everyone Has A Story

2011-11-15T05:00:00.000-05:00

I was one of those parents who didn’t do a baby book for my son – I did a baby box! Well, actually several boxes. I think I am up to 4 boxes and he is now 20 years old. So many things were precious to me, and I had to save them. I want my son to have the mementos of the earliest moment of his life, and all the important things that have come since that beginning.

I have a recording of the first time I heard his heartbeat in utero. I have ultrasound pictures. I have all the cards from the baby shower my co-workers gave me, and I have the first stuffed animal he ever stared at. I have his first kindergarten registration form, and his awards for winning first place in the PTA Reflections photography contest. I have his first T-ball uniform, and his scrapbook from his trip to Space Camp in Florida. The list goes on and on.

I remember my dear mother-in-law presenting me with my ex-husband’s memory boxes when we were first married, and I plan to share my son’s boxes with the special person he chooses to spend his life with.

Sadly, I don’t have all those things for the children I have adopted.

Most of my children came with a few memory items – a random picture, a first outfit, maybe some early school photos. While I cannot recreate all the special moments from their birth until they joined my family, I can create a life book for them. I found this wonderful explanation about life books and what can be included in them from the Adoption Blog at Forever Parents. The information was compiled by Joanne Greco:

Your childs lifebook is their story. It’s their past, present and future. It’s a record of their life though words, photographs, memorabilia, artwork and more. There is no wrong way to do a lifebook. It’s really more of a concept. If your child is old enough to participate in helping to put together their lifebook, encourage them to do so. It is great way for open up lines of communication about how they feel about having been adopted, feelings they may have about their birthfamily, etc. Plus, it is a fun thing to do as a family.

For those of you who are starting the process, start early and plan it out. Invest in a journal or notebook where you can make notes of things you want to include in the lifebook. Be sure to include your feelings. When you actually sit down to do your lifebook pages, then your journaling information will be already put together and you can use it as a reference. Save mementos & pictures that you may want to use.

Here are some page ideas to get you started. Some may apply to your adoption, some may not.

~ Why you decided to adopt
~ Why you chose a specific country
~ The process you went thru
~ Those who helped you with the process
~ Copies of paperwork that you might want to include
~ Agency letterhead
~ The referral call & what you did when you got it
~ Referral photos & other photos you receive (be sure to write down all those emotions you felt when you saw the photos)
~ Medical exam info
~ What you did during the wait to keep busy
~ Your child’s name – who named them, significance, how decided upon, etc
~ Their room you fixed up for them
~ Preparing your home
~ Family trees (both your family tree and birthfamily info & pictures, if any is known). If you want to wait before sharing more detailed birthfamily info with your child you could put these pages in a separate private album and let your child decide if they want to add them to their album, etc or you add them once you have discussed these issues with your child. Whatever you and your child are most comfortable with.
~ Pictures of your child that you received during the process.
~ Information about their birth place during this timeframe – significant events, stats on what life was like at the time of their adoption, relevant articles, etc
~ A newspaper from the date they were born
~Picture of you ready to embark on your journey to meet or bring your child home.
~ Travel itinerary
~ Ticket stubs
~ Brochures of places you visited
~ Something from the hotels you stayed at, etc.
~ Notable events & people from your trip
~ Pictures from your trip
~ Pictures of the orphanage, caretakers, foster family, foster family home, birth location
~ adoption quotes
~ adoption poems
~ Your first family picture.
~ Your feelings on finally meeting your child.
~ Information your child’s foster family or caretakers share about your child.
~ Your court appearances or visa appointments.
~ First day in their new home.
~ Adoption timeline.
~ Copies of any adoption announcements you placed.

Again, because I have decided to save so many things, my children don't have life books, they have life boxes, and they enjoy looking through them every bit as much as my birth son likes looking through his!

Make sure your children - all your children - have access to their special stories. It will help ground them in so many positive ways, trust me!

Can't Get In

2011-11-14T05:00:00.000-05:00

I really like that Ronnie is in an inclusive setting at school. I think all children with disabilities should be. But, an interesting dilemma arises from time to time, and it has both a positive and a negative aspect.

Many of Ronnie's non-disabled peers treat him no differently than any other friend. That is the good part. In fact, because they don't think of him as different, they often invite him to their homes to 'hang out'. The negative aspect is that they don't consider things like how he will actually get into their home, or how he can use the bathroom at their home.

Very, very few homes, at least in my area, have wheelchair ramps. Many have very steep outside steps at both the front and rear of the house. As such, Ronnie cannot get into their homes. There have been times when the parents of his peers offer to lift him in his chair and carry him into their homes. I appreciate that, but there is just something about it that bothers me.

And if he does get in the house, if his friend's bathroom doesn't have grab bars, it will be very difficult for Ronnie to use the bathroom. What that means is that we do need to schedule visits around his cathing schedule. Again, not an optimum aspect of a visit.

We usually work around this situation by inviting Ronnie's peers to our home. But I know he would really like to be able to get out and visit at someone else's home from time to time.

It's just one of those things that I wish I could make better, but I really don't know how...

Thankful for Nordstrom

2011-11-11T05:00:00.000-05:00

I've never been a Nordstrom's shopper, but I'm changing my mind now! Take a look at this sign that is posted on all Nordstrom's stores:

As someone we has always disliked the fact that Thanksgiving gets overlooked, I truly appreciate gestures like this. Thank you, Nordstrom!

These Faces

2011-11-10T05:00:00.000-05:00

Just look at these faces:

All these faces want is to wake up each morning and see your smiling face there for them. Can you make the committment to parenting a child from the foster care system? Can you help turn a life around? Can you stand a little more love in your life?

If so, please consider adoption, and then you too can celebrate National Adoption Month each year!

Special Exposure Wednesday

2011-11-09T05:00:00.000-05:00

This is one of the most beautiful pictures I think Chip has ever taken. He took a picture of the reflection of trees in Bear Creek Lake. Then he flipped the picture, and voila!

What About You?

2011-11-08T05:00:00.000-05:00

From a very young age, I always wanted to make a difference – to know that my time spent on this earth was worth something. As I have gotten older, those thoughts refined themselves into wanting to leave the world a better place once I am gone. And through the adoption of some very special children, I believe I am well on my way to achieving that goal.

As I mentioned last week, November is National Adoption Month. Thousands and thousands of children are waiting for families to call their own. These children often have been through hell. They have seen and experienced things that no one, and especially a child, should see and experience. Parenting them will not always be an easy job. In fact, sometimes it will seem downright impossible. But it’s not.

When I first decided to adopt as a single parent, most of my friends and family told me I was crazy and shouldn’t even consider parenting another child, especially a child with significant special needs. In fact, many of my friends have felt that way when I decided to adopt three more times, and when I mention that I may not be finished building my family, almost everyone thinks I am crazy.

Maybe I am crazy, but I am not wrong. Adopting and parenting children with special needs, both medical and emotional needs, has been one of the most rewarding aspects of my life.

I know beyond a shadow of a doubt that I have made the lives of four very special children better than they would have ever been. More importantly, my life has been enriched in a way that words just can’t express.

What about you? Would you consider opening your heart to a child that needs a family? I promise that if you do and it gets really tough, I will be here to help you….

A Visit To Bear Creek Lake

2011-11-07T05:00:00.001-05:00

Just like the flowers in my garden, I believe my children need lots of sun and fresh air to be their best. Making that happen gets a little tough on these shorter Fall and Winter days. The sun is almost ready to set by the time they get home from school each afternoon!

So, on the weekends, I try to plan activities that will get everyone outside. As long as the sun is shining, even if it is cold, we try to do something that keeps us outside for several hours each weekend day. This past weekend, we visited one of our favorite places, Bear Creek Lake State Park.

The Park is only about an hour from our home, and this time of year, it's not the least bit crowded. Here are some pictures from yesterday's outing:

What do you do to make sure your children get enough outside time in the Winter?

"We're Going To Be Friends"

2011-11-04T05:00:00.000-05:00

I've published videos before from D-PAN, the Deaf Professional Arts Network, and here is their newest one. I love it, and thought you might enjoy a positive end to your work week also!

National Adoption Month

2011-11-03T05:00:00.000-05:00

"A mother is likened unto a mountain spring that nourishes the tree at its root. But one who mothers another's child is likened unto a water that rises into a cloud and goes a long distance to nourish a lone tree in the desert."
The Talmud

Any of you who have been long time readers of this blog know beyond a shadow of a doubt how wonderfully adoption has touched my life. Although in my early twenties I had absolutely no vision of a house full of children, now I can't imagine my life without them, and maybe more.

November is National Adoption Month, and many of my posts this month will explore that subject. I'll take a look at the good, the not so good, the easy and the difficult. I'll explore the many facets of adoption, and I will share some amazing stories.

Even if you are not starting this month with any thought that adoption will one day touch your life, I ask that you still read my posts. Perhaps if not you, a family member, a co-worker or a close friend will consider adoption, and you will be able to understand and maybe even help them as they progress through their journey of finding a new addition to their family.

18 years ago, I was led down a path about which I had no understanding. I just knew that I needed to follow that leading. Again this month I feel led to dedicate this month to adoption. The first leading changed my life in glorious ways. Maybe, just maybe my posts this month will reveal a leading and a glorious change for your life!

Special Exposure Wednesday

2011-11-02T05:00:00.001-05:00

Another Halloween come and gone....another pumpkin painted with a funny face...

Project Lifesaver

2011-11-01T05:00:00.000-05:00

I wrote last week about Robbie Wood, a nine year old boy with autism who wandered away from his family. After 6 days, Robbie was found and reunited with his family and surprisingly suffered no major injuries as a result of his ordeal. I found myself wondering what I would do if I were the parent of a child that wandered away.

My mind immediately went to something I had read about and which I knew was offered by the police department in my area - Project Lifesaver. According to the Project Lifesaver website:

“Project Lifesaver International helps provide rapid response to save lives and reduce potential for serious injury for adults and children who wander due to Alzheimer’s, autism, Down syndrome, dementia and other related cognitive conditions. Project Lifesaver provides equipment, training, certification and support to law enforcement, public safety organizations and community groups throughout the country and nation. Project Lifesaver has over 1,200 participating agencies across the U.S., Canada, and Australia, and has performed 2,449 searches in the last 11 years with no serious injuries or fatalities ever reported."

If you are the parent of a child with Autism, Down Syndrome or any other disability which might mean your child will wander or run away, or if you care for someone with Alzheimer’s, I strongly urge you to visit the Project Lifesaver website, and then to find out if your community has such a program.

I don’t want to read about another Robbie spending days lost in the woods….

Defining Moments

2011-10-31T05:00:00.000-05:00

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

2011-10-28T05:00:00.000-05:00

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

2011-10-27T05:00:00.001-05:00

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

2011-10-26T05:00:00.000-05:00

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

Hailing a Cab (maybe)

2011-10-25T05:00:00.000-05:00

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

2011-10-24T05:00:00.000-05:00

“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

2011-10-21T05:00:00.000-05:00

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

2011-10-20T05:00:00.000-05:00

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

2011-10-19T05:00:00.000-05:00

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

2011-10-18T05:00:00.002-05:00

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