Pipecleaner Dreams

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

Room in the Nest

2011-10-17T05:00:00.000-05:00

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

I experienced the same disappointment this past weekend.

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

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

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

She didn't.

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

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

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

A Battle With The Dark

2011-10-14T05:00:00.000-05:00

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

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

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

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

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

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

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

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

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

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

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

Dizzying

2011-10-13T05:00:00.001-05:00

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

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

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

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

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

Special Exposure Wednesday

2011-10-12T05:00:00.001-05:00

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

Rare Video of Helen Keller

2011-10-11T05:00:00.001-05:00

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

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

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

Compassionate Sportsmanship

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

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

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

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

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

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

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

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

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

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

Phillips or Flat Head?

2011-10-07T05:00:00.000-05:00

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

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

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

I want my children to:

Know how to use a plunger to unstop a toilet

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

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

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

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

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

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

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

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

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

Know how to sign for a package

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

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

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

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

Know how, when and who to ask for help

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

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

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

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

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

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

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

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

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

Minimizing the Fog, Maximizing the Smiles

2011-10-06T05:00:00.001-05:00

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

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

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

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

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

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

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

Special Exposure Wednesday

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

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

My Kind of Vacation

2011-10-04T05:00:00.000-05:00

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

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

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

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

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

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

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

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

She LET Them Win

2011-10-03T05:00:00.000-05:00

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

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

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

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

Dedicated To You

2011-09-30T05:00:00.000-05:00

Claudia Carawan is the music teacher at CharterHouse School in Richmond, on the campus of United Methodist Family Services, the wonderful organization that has helped me build my special family.

I love many of her songs, but this one especially made me think of the beautiful Miss Brooke and her incredible mom, Lynnette.

I love you both!

Buyer Beware

2011-09-29T05:00:00.000-05:00

Have you ever had this happen? If so, I would love to know how you handled it.

IEPs are almost always held in the Spring in my school district. The planning is for the next school year. Ronnie's IEP was held in May, and his teacher last year, a teacher for the Deaf, as well as the Chair of the Hearing Impaired department, tried very hard to convince me to move Ronnie from our neighborhood high school to another school where the district was trying to consolidate services for Deaf students. In addition, the teacher said she was also moving to that school.

The other school was not that far away from us, and Ronnie said he wanted to go (although I believe there had been a little coercing before the meeting). And, his signing friends were also moving, I was told. The move was going to make my life just a tad bit harder, but if it was in Ronnie's best interest, I would certainly do it.

So I made the decision that he could move. We hammered out the rest of the IEP - heavy on academics, not so heavy on functional skills because I believe it is my job as his parent to focus on those things.

Fast forward to September.

Ronnie starts at his new school and I find out that the teacher for the Deaf is not going to be at that school, and the Chair of the Department has retired. And I'm not so sure that this is a good placement. But Ronnie says he likes the new school. So far the homework that he brings home is heavy on functional skills and light on academics. And, he is only one of three students in his classroom.

Making a change at this point back to his previous school would be difficult. He is starting to make friends, especially girl friends (!) at the new school, and I'm not sure moving him again so quickly would be a good thing. But something needs to be different.

I'm thinking I need to call an IEP meeting and share these concerns with the school team. What do you think?

Special Exposure Wednesday

2011-09-28T05:00:00.000-05:00

Chip really gets into his work!!!

Visualize This

2011-09-27T05:00:00.002-05:00

Sometimes I like to visualize in my mind what it must be like to be in a wheelchair like Ronnie or Ashley. Doing so helps me figure out accommodations that can be made to help make their travels a little easier. Today I was attending a business-related conference at a local hotel and decided this would be a good time for a visualization.

Unfortunately, the first leg of my visualization trip was not so good. I had to park in the parking garage for the hotel. I tried to pull into a handicapped parking spot, but the access aisle was being used for storage. See the picture below.

This is not an usual sight though. In the past I've seen piles of dirt, piles of snow, snow moving equipment, and grocery carts piled into the handicapped parking spot and access aisle. The way these concrete things were positioned, it was impossible to open the car door. I pulled out and found another parking spot. A person with a wheelchair may not have been able to do that.

Then my visualization took me up the elevator to the hotel lobby so I could register for the meeting. All that went well. The registration counter was lowered and had I been in a chair, I would have had no problem signing in and picking up my materials.

The next problem came when I tried to move through the hallways of the conference area. There were vendors lining each side of the wide hallway, making it not so wide. Throw in approximately 800 people, and traveling in a chair would have been nearly impossible.

There would have been excuse me after excuse me, tap-tap-tap after tap-tap-tap trying to get people's attention so I could move past. I think I would have just given up at that point, and now I understand better why Ashley and Ronnie can both get so frustrated in crowds.

Finally I found the room I was supposed to be in. It was a large banquet hall filled to capacity with round tables, each seating 8 people. There was hardly room to walk between the tables, much less move in a wheelchair. Had I really been in a chair, I would have had to just wait by the door for the entire presentation.

After the keynote, we were to move to breakout rooms for the next session. Mine was in a room with two aisles of chairs, each having 10 chairs in each row. Again, there was no room to move a chair down the aisles. I would have to park my chair either in the front of the room or the very back of the room. Either would have marked me as 'different' to the crowd.

After that session, it was back to the banquet hall for lunch. I thought I had it figured out this time. I would go in early in my chair, before the room filled with people, and that way I could get to the far side of the room to sit with my co-workers. But I forgot something very important. Had I done that, I would have been trapped in the room until everyone else left at the end of lunch. A trip to the restroom would have been out of the question.

And so the day continued - too many people, not enough room, and doors to heavy to handle while trying to also move a chair. I found myself getting very frustrated and wanting to just yell at someone. Again, I now understand Ashley's and Ronnie's behavior a little better.

But there was one thing that really, really surprised me. How could there be almost 1000 people in one location and not one of them have a physcial disability? Does that seem a little odd to you?

Easy Being Green

2011-09-26T05:00:00.000-05:00

This weekend, the kids and I decided to try our hand at making a rain barrel. Our local science museum was having both the rain barrel workshop and a Go Green Garden Festival. Since we are museum members, the only cost involved was $25 for the rain barrel and all the pieces for making it. After checking the prices online for a ready-made rain barrel, we got a real bargain, and the kids learned something in the process!

Here are some photos. Chip, of course, did most of the making of the rain barrel, but Ronnie and Ashley were at the ready in case he needed any help! And of course, at the end, they both provided quality control checking!

The Go Green Garden Festival was packed with lots of good information, and unfortunately green stamps for everyone's hands. Ashley did NOT like the stamps, and did her best to get it off. I guess she took Go Green seriously...

The booth at the festival that intriqued me the most was a Living Roof demonstration. I really, really, really want one....

We could use the water from our new rain barrel to keep it alive!!

No Longer About Basketball or Interpreters

2011-09-23T05:00:00.001-05:00

I approached my school district with the following request:

Ronnie started playing wheelchair basketball last school year for a team organized by Sportable. Sportable is a non-profit organization dedicated to providing sports experiences for people with physical disabilities.

Ronnie loves playing on the team and is showing real potential as an athlete. It’s a sports experience that unfortunately he cannot get at school. While he can attend school events such as football games, basketball games, and such, because he is a wheelchair user, he can’t participate on those teams. To my knowledge, the school district does not offer any wheelchair-centered sports teams.

Because he is not afforded the opportunity of school sports teams, I would like to have school district support for his commitment to the Sportable wheelchair team, including interpreter support during practices and games. If HCPS did offer wheelchair sports teams, I’m sure providing an interpreter for those would not be a problem.

The school district mulled it over and then politely declined my request because they contend they do offer sports teams on which he could compete. When they explained the teams to me, I knew exactly what they were talking about.

In my school district, the special education department has organized ‘special’ basketball games where one school team plays another. The teams are made up of all the special education students in each particular school, and Ronnie played on his school team last year. However, he was the only student in a wheelchair. As you can imagine, this is not the level of basketball play Ronnie prefers.

I explained that to the person who contacted me about my request. She said, “Well, if he would like to be one of the managers of our regular football team, we could arrange that.”

I replied, “So if he would like to be the token disabled kid who sits near the bench for your high school football games and you call him a manager, then that would be ok with you?”

She said, “Of course.” (I swear, that really was her response.)

What would your response have been after that...????

What Do You Think?

2011-09-22T05:00:00.000-05:00

Ronnie has a wheelchair basketball tournament coming up in a few weeks. It will be held at one of our local universities, and is sponsored by Sportable, an organization in our area that is committed to providing adaptive sports opportunities for people from age five to age 90.

Ronnie is the only Deaf player on the team. We've spent the last week or so trying to figure out how he will know if the referee blows his whistle, and how the coach can convey play strategy to Ronnie.

I think we have figured out the whistle thing with the help of the women's basketball coach from Gallaudet University. When Ronnie's teammates hear the whistle, they will put their arms in the air thus alerting Ronnie.

But the coaching instructions are a bit more difficult. We have experimented with the coach having a blue tooth headset and communicating via an IPhone dictation app to Ronnie. But, doing it that way is a little cumbersome. The ideal solution would be to have an interpreter.

But interpreters are really expensive.

In the past, we had a volunteer and that worked really well. Unfortunately our volunteer moved away, and I haven't had much luck finding another volunteer. So one of the options we had been exploring was to ask the university where the tournament is being held to provide interpreters for the day.

They declined, saying they felt it was Sportable's responsiblity to provide the interpreters.

Two conflicting opinions have been voiced. One, the interpreting company feels that the university is just as responsible for interpreters as they are for accessible bathrooms, wheelchair ramps, and such. In a very impassioned email on the subject, the head of the interpreting company wrote:

Does this mean that if your child was in a wheelchair they’d put a lock on the handicap-accessible bathroom door? Put gates in front of ramps? Would you have to find a volunteer to carry your child (and wheelchair) into the building? Put a diaper on him (since he wouldn’t be able to get into the bathroom)?

The other opinion says it is indeed Sportable's responsiblity to provide interpreters since they are the ones running the tournament. Unfortunately, Sportable, being a non-profit that has a shoestring budget, cannot afford to do that.

So I am just wondering - whose opinion do you think is correct?

Special Exposure Wednesday

2011-09-21T05:00:00.000-05:00

Ahhh, young love. One day, a picture in a frame placed just so for viewing from any point in a room....the next day, a crumpled heart on the floor...

Dreading The Next - Revisited

2011-09-20T05:00:00.000-05:00

I wrote a post last week titled "Dreading the Next." This past Saturday, an article and a video appeared in the New York Times titled "Autistic and Seeking a Place in an Adult World."

Though their disabilities are different, Justin, the subject of the NYT article, and Ashley face similar challenges in the future. And like Justin's parents, my struggles in helping to facilitate a good future for Ashley at times seem overwhelming.

This article does an excellent job of relating those challenges and struggles. It's a long article, very long, but worth every second of your time to read. There is also a video which shares a lot of Justin's story, but not as much as the article itself.

If you are the parent of a soon-to-be-adult with significant disabilities, I don't think you will regret taking some time to read Justin's story....

Autistic and Seeking a Place...

(article and picture courtesy of the New York Times)

Thank You, Armenia!

2011-09-19T05:00:00.000-05:00

It was a cool, dreary weekend here but the kids and I found some wonderful food to warm both our bodies and our spirits.

We went to the 53rd annual Armenian Festival!

I'd never been to it, but heard in the news that it was much like our city's annual Greek Festival, which I love but usually don't attend because the crowds are huge and not very wheelchair-friendly. The reporter on the news said that if you liked the Greek Festival that you would like the Armenian Festival also, and that the crowds were nowhere near are large.

So we piled in the car and headed to the Festival.

Parking was a bit of a problem because the festival was being held in the parking lot of the Armenian Church. That left only on-street parking, which is difficult at best when unloading wheelchairs and loading people into them. But we managed and were rewarded with some wonderful food!

I had a pork kebob with rice and pita bread. Ronnie had a chicken kebob with rice and pita bread. Chip had a beef and lamb burger which looked really really yummy, and Ashley wouldn't try anything - until I bought a cheese boreg for her. The boreg was described as Philo with Cheese Filling. It wasn't the normal yellow, gooey cheese she is used to. Rather it was feta cheese with olive oil, parsley, egg yolks and pepper. I loved it but thought she would turn up her nose at it.

I was wrong!!!

And then there were the pastries. Need I say more....

Front Porch Biology - Take 2

2011-09-16T05:00:00.000-05:00

I wrote back in 2007 (have I really been blogging that long??)about an impromptu biology lesson with Ashley on our front porch. This week another lesson, this time with Ronnie, happened.

Ashley's school bus had just picked her up, but Ronnie and I were still waiting for his. He noticed two squirrels frolicking in the front yard, and signed to me that they were 'making babies." That took me by surprise even though it shouldn't. He is 16 years old. I signed back, "Yes, they are," and we continued to watch.

Ronnie pointed out that the male squirrel kept biting the female squirrel. He signed, "Fathers shouldn't be mean to mothers." Ummm, I think we weren't just talking about squirrels anymore.

I asked him if his birth father had been mean to his birth mother, and he signed, "Yes." I told him that I was sorry and that he was correct, fathers should never be mean or hurt mothers.

He watched a few minutes longer. I hugged him and told him that I loved him. He signed it back as his bus pulled up to our house....

The "R" Word

2011-09-15T05:00:00.001-05:00

This video has been making the rounds of Facebook and some other blogs, but it is so powerful that I wanted anyone who hasn't seen it to get the chance to see it.

Special Exposure Wednesday

2011-09-14T05:00:00.001-05:00

Lady Fingers...Ashley's favorite!!!

Dreading The Next

2011-09-13T05:00:00.001-05:00

I think I’ve lived in a state of denial the past couple of years when it comes to thinking about Ashley’s post-school life. She is 16 and we do have some time, just a little time, to figure things out, but I am at the point of worrying now.

Research shows that employment for people who are deafblind and multiply disabled is not good. That same research shows most of those people end up just living at home or in a *facility*, unable to find work.

I hope to be around for a while yet, but I do still worry, and worry seems like too mild a word for my emotions on this subject, about what will happen with Ashley when I am no longer around. I don’t believe she will ever be able to live independently, and even if she could acquire those skills, would she be able to find a job to support herself? And, with my experience with *facilities*, I don’t believe there would be anything worse that could happen to her.

The school system is not doing a very good job of preparing Ashley for life after school. Yes, we have functional goals in her IEP, but the school’s investment ends when Ashley leaves school, and sometimes even sooner. There is a one size fits all mentality in the school when working on job skills. “let’s all go wipe down the table in the cafeteria” for example. I have yet to see a real interest in discovering what Ashley prefers to do, what tasks interest her, and what tasks drive her crazy. If her preferences are not factored into the training, it seems to me to be a total waste of time.

In Virginia, we do have a rehab services agency that purports to serve people with disabilities who want to find a job, and training for a job. That agency won’t become involved until the last year of school for the student, and at present, have shut their doors to all because they say they are out of money. It’s too late to wait until the last year of school. And my experience with this particular agency is that they will work with the more mild disabilities, but send them someone with multiple, less common disabilities and they throw up their hands.

So, any of you in a similar situation as mine, what have you done or what are you planning to do for the post-school years for your child with multiple or less common disabilities? Is your child going to stay in school for as long as possible? Have you found private agencies that serve adults with disabilities to be more proactive than government-run agencies? And, at what age did you start working on a plan for your child?

Are you as worried as I am?