Thursday, December 29, 2011

The Bright White Light

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.

Tuesday, December 27, 2011

Can You Hear Me Now? NO!

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?

Saturday, December 24, 2011

All Is Revealed!

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!!!

Friday, December 23, 2011

Holiday Outings

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!

Thursday, December 22, 2011

Orange? Blue? Hot Pink?

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!

Wednesday, December 21, 2011

On To The Moon!

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!)

Tuesday, December 20, 2011

Channeling Jack Kerouac

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.)

Monday, December 19, 2011

Spider Man

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.

Friday, December 16, 2011

Just and Loving?

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.

Thursday, December 15, 2011

Someone to Pinky Swear With

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.

Wednesday, December 14, 2011

Tuesday, December 13, 2011

Spenser and Dayton

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!!

Monday, December 12, 2011

Do It Right....Or Else

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!

Friday, December 9, 2011

Just The Way You Are

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

Thursday, December 8, 2011

Bus Discrimination

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???

Wednesday, December 7, 2011

Special Exposure Wednesday

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

Tuesday, December 6, 2011

Doctor? I Wonder...

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....

Friday, December 2, 2011

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

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...

Thursday, December 1, 2011

Take Me Away

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!

Wednesday, November 30, 2011

Special Exposure Wednesday

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

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:

Tuesday, November 29, 2011

A Market Only For Some

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???

Monday, November 28, 2011

What About The Leftovers?

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.

Thursday, November 24, 2011

Happy Thanksgiving!

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

Happy Thanksgiving everyone!

Wednesday, November 23, 2011

Special Exposure Wednesday

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!

Tuesday, November 22, 2011

Thankful for Mr. Ralph

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!!

Monday, November 21, 2011

"I Don't Want Pity"

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.

Friday, November 18, 2011

See What I'm Saying

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...

Thursday, November 17, 2011

Boy Talk

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…

Wednesday, November 16, 2011

Special Exposure Wednesday

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

Beautiful picture, Chip!

Tuesday, November 15, 2011

Everyone Has A Story

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!

Monday, November 14, 2011

Can't Get In

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...

Friday, November 11, 2011

Thankful for Nordstrom

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!

Thursday, November 10, 2011

These Faces

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!

Wednesday, November 9, 2011

Special Exposure Wednesday

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!

Tuesday, November 8, 2011

What About You?

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….

Monday, November 7, 2011

A Visit To Bear Creek Lake

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?

Friday, November 4, 2011

"We're Going To Be Friends"

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!

Thursday, November 3, 2011

National Adoption Month

"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!

Wednesday, November 2, 2011

Special Exposure Wednesday

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

Tuesday, November 1, 2011

Project Lifesaver

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….

Monday, October 31, 2011

Defining Moments

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

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

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

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

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

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

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

Friday, October 28, 2011

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

Thursday, October 27, 2011

Pray for Robbie


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.

Wednesday, October 26, 2011

Special Exposure Wednesday

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

Tuesday, October 25, 2011

Hailing a Cab (maybe)

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

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

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

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

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

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

According to the New York Daily News:

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

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

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

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

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

Monday, October 24, 2011

A Tribute to Fred Fay

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

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

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

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

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