Yum Yum

You know what I love most about Chip being out of college for the summer? The wonderful food he makes for us!

Sunday was cold seafood salad over lettuce leaves from our garden, cheddar/Old Bay biscuits, and banana cream pie milkshakes. YUMMM!

She LET Them Win

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

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



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





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

Special Exposure Wednesday

Chip really gets into his work!!!

Teacher

Chip is a business major (information systems) in college, and is doing very, very well at that. He is also a burgeoning photographer and is doing very, very well at that. He also loves to cook gourmet meals, and again, he is doing very, very well at that. But there is also something else that he is doing well with, and that is being a teacher for Ronnie this summer.

Chip has taught Ronnie to do his own laundry – from start to finish. When adaptations or modifications were needed for Ronnie to accomplish that, Chip figured it out and implemented them.

He is teaching Ronnie how to cook. So far Ronnie has made peanut butter fudge and the best baked beans ever.

He is teaching Ronnie how to clean up the kitchen. Ronnie loads dishes into the dishwasher, adds the soap, and know how to start it.

He is teaching Ronnie about money – about the exchange of money for goods and services, and how to make sure the right change is received. Chip’s next plan is to teach Ronnie how to save some of the money he earns as his allowance.

Chip has taught Ronnie how to clean his room and make his bed each morning. He has taught him how much easier it is to move around the room when the floor isn’t littered with objects, and how much easier it is to find things when they are put in their proper place.

In short, Chip is teaching Ronnie the skills he will need to live independently as an adult.

I know Chip likes information systems and photography and cooking, but I do have to wonder if he is missing his calling as a teacher and mentor for people with disabilities!

Well On His Way

Chip has always done things on his time schedule. He ignored rules such as when he was supposed to start walking as a child - he started at 8 months and I was thinking I would have at least a year before I had to start chasing him. He learned to talk when he was good and ready and had something to say. He didn't let peer pressure influence any of his actions in either middle school or high school. Although he did get his learner's permit when all his same-age peers were getting theirs, he felt no pressure to get his license or even start driving. And I have never had any worries that he would be influenced to experiment with cigarettes, alcohol or drugs.

Chip has also been an excellent money manager since he first learned what money was. Once he started working, he followed the advice so many others don't - pay yourself first. He always has a reasonable balance in his savings account, and he obsessively researches almost every purchase.

So once he finally did decide he was ready to get his license and drive, he was in a great position for purchasing a vehicle. As always, he did his research, and he approached the salesman at the car dealership armed with the price he intended to pay. The salesman, the dealership manager, and the financial manager kept commenting on how prepared he was, how impressed they were, and how they wish their 20 year olds were more like him. Oh, and he did get the price he wanted plus a few other perks thrown in also.

So, at barely 20 years old, a full-time student in college (maintaining Dean's List status), and working full-time, Chip purchased his first car! Needless to say, I am very proud of my boy!!

Twenty Years of Joy and More To Come!

Twenty years ago today, at 11:40 PM, my life changed. A dream that began growing in my heart at a young age took flight, and I gave birth to the most incredible son in the world.

He and I have been through a lot together. From the day of his birth when his father was being arrested for behaviors not befitting a new parent – to the difficult times while I learned to be a single parent – to having to share his mother with four adopted siblings, some of whom caused and continue to cause great stress in both his life and mine – to the many joys we have shared – he has stood strong.

He is a good man, in the truest sense of the word good. He is caring and loving and committed. He fights for his sibling’s rights all the while keeping an eye to the future and the rights of all that are oppressed.

He wants to make the world a better place, and I know beyond any doubt that he will. The good he will do in the future is already written on his heart, and I believe that the positive difference he makes will be felt by many.

He is my heart, my love, my son. I am so proud of you, my dear Chip, proud of all you have accomplished and of all you are yet to accomplish. No mother could ask for more than you have given me.

I love you – Happy Birthday!
Chip's Mom

Brotherly Love

Sunday was pumpkin day for my punkins! It was also a day of brotherly love - big brothers helping a younger brother and sister!

Starting Early

The kids and I decided to visit the Williamsburg outlet stores this weekend and do some Christmas shopping. With the economy, more specifically my economy, being in the shape that it is, Christmas purchases must be spread out over several months. Of course, the primary reason Ashley wanted to go was to visit the Converse Shoe Outlet!



Chip had decided that he would get Ashley a new pair of Converse sneakers (pair number 14!) for Christmas, and he wanted her to pick out the color she wanted.



Of course, she wanted them all!!



But she finally settled on orange, and they are now safely tucked away in the Christmas present hiding place!

If only everyone was so easily pleased...

Captioning on Demand

Finding closed captioned movies at the theatre is difficult in my area, to say the least. There is only one theatre that shows captioned movies, and the movies are never at the theater until weeks after the opening shows. For example, it took about 4 weeks before Eclipse was available with captioning, and then the show times were not such that we could go.

But Chip, my ever resourceful son, has found a solution - a solution that will allow Ronnie to go to any movie at any theatre and have captioning available.

Chip found an iPhone/iPad/iPod Touch application that will display captioning (or subtitles if one doesn't need the captioning as it is presented to the Deaf). He's checked dozens of movies, including first run ones, and captioning is available!

Here are some screen shots. First you enter the name of the movie you wish to see captions for and perform a search:



Any matches show up and you select the correct movie:



And here is an example of the captions. It's very similar to the technology used in rear-window captioning (which the theatre near us does not offer).



Ronnie can use it in a movie theatre or at home, as pictured here. Chip set his iPad up right next to Ronnie's TV.



How cool is this, and how brilliant is my geeky son??!!!

Teaching Through The Years

As I was drifting off to sleep last night, I began to think of all the things I have tried to teach my children over the years. I also realized that I have taken several different approaches to that teaching.

When my children were very young, direct instruction worked best (“Here honey, this is how you tie your shoes.”, “Hold your fork this way and it will be easier to pick the food up.”).

When they got a little older, I believe I started teaching more by example. (“Mommy is going to volunteer at the Food Bank today.”, “Sit tight while I take this extra plate of food to our neighbor who is not feeling well.”).

Finally as teenagers, I am letting my children learn through failure, mistakes and consequences. (“You’ve chosen to not do your homework all semester, so you can’t go on the field trip.”, “Do you think you should have checked the pockets of your jeans before washing them because I don’t think you can get the pink out of your underwear now?”).

I am very proud of the many things my children have learned, and last night I started listing some of those things.

My oldest son, Chip, is an extremely compassionate, humble person. And, he knows how to plant and tend a garden. I’ve always believed that a person who can grow their own food will never go hungry.

Jessica has learned to control the angry feelings that overtake her sometimes. She understands that if she does lose control, she will not like the consequences, and that other people will not want to be around her. Also, despite all the doctors telling her she would never be toilet trained, at age 11 she did master that skill. So there, doctors!

Corey still has a lot to learn, but I think it is finally starting to click with him that if he chooses to not do his homework and study, he may fail in school. And when you fail in school, your plans for after graduation will be put on hold. One thing he has learned is to appreciate many different kinds of food. When he first joined my family almost 6 years ago, he didn’t want to eat much of anything other than junk food. Now, he will eat anything and everything that is put in front of him. Leftovers are a distant memory in my house.

Ashley has learned to stand up for herself, an extremely important quality for a person with a disability. She has also learned the value of charm and that a smile can bring many more rewards than a frown. She has exceeded and continues to exceed all the limits doctors placed on her as an infant. They were oh so wrong, and she works to prove that every single day.

Ronnie is still adjusting and learning how things work in our family. He is currently working on requesting and not demanding, thanking and not expecting. He has one of the sweetest hearts of any child I ever known, and now with the excellent role model he has in Chip, I predict great things for him. He needs to work a little more on self-sufficiency, but he seems very open to that, especially if he thinks it will get him the attention of a certain young lady in his class!!

So what skills make you and your children the proudest?

The Color of Water

I love having a geek in the family! My son, Chip, is always finding things that I never knew I needed, but then realized I couldn't live without.

Today's find is something that will help Ashley know when the water from our faucets is either hot or cold. Even though I had already put red and blue electrical tape on the handles, she had a tough time seeing that with her significant visual impairment. I needed something else...

Chip came to the rescue by finding a faucet light with led heat sensitive color changing ability. We had seen similar products a year or so ago, but the cost was prohibitive. Chip found this one on Amazon and it only cost $10!!

Here are some pictures. The water appears red when the temperature reaches 85 degrees. Otherwise it appears blue. Needless to say, Ashley loves it!

Growing Remarkable Children

American Idol started a new season last night, and apart from all the non-singers that the show highlights purely to make fun of was a young lady who was quite spectacular. And, I don’t mean that she was a great singer (although she was).

This young lady was 16 years old and was one of nine children. The child born after her was a son with Down Syndrome. The parents decided that they wanted their son to have a companion like himself, so they adopted another child with Down Syndrome. And then, they went on to adopt two more sons with Down Syndrome.

The family was indeed amazing, but their daughter had such a positive spirit, an old soul in a young body. The judges all noticed it, and commented. She bowled them over with both her singing and her grace. And all that reminded me of my son, Chip.

Chip, like the young lady, is an old soul – a remarkable person, it seems, from the time he was born. And growing up with his sister, Ashley, has refined that soul and turned him into a very special man.

What do you think – does growing up with a sibling that has a disability leave a lasting, positive influence on your children without disabilities?

Guest Blogger - Chip

My son, Chip, who is a college freshman, was given an assignment in his English class to write a paper about a problem of his choosing, and then to brainstorm a way to solve the problem. He got an 'A' on the paper, and I wanted to share it with you all also:

Group Home Residents Are People First

John Burton claims, “Residential homes are bedeviled by poor management on all levels” (Burton, xv). I wholeheartedly agree with John Burton’s statement about residential home management. The reason is because my adopted sister, Jessica Nickerson, is currently living at a group home for the mentally disabled. Having witnessed the poor conditions that Jessica experiences each day, I want to restructure how the group home is managed and enrich, rather than demean, the lives of all the residents at the group home.

Jessica, now nineteen years old, was diagnosed with brain cancer at four months of age. She had a tumor removed, followed by two years of chemotherapy and radiation treatment. All of that left her with a significant cognitive impairment. However, even worse than all of that were the nine years she spent in foster care. While in foster care she was both physically and sexually abused and as a result she is diagnosed with a significant mental illness.

Jessica was adopted into my family when she was nine years old. Due to her mental illness and resulting aggressive behaviors towards other family members, my mother made the difficult decision to place Jessica in a group home at the age of thirteen. The group home that my mother chose is operated by a large corporation, which operates in many states along the east coast. It was that fact and the fact that it is one of the more expensive group homes that led my mother to believe it would be a good place for Jessica to live. However things have not worked out that way.

From the time Jessica was placed in the group home there have been a plethora of issues. The first issue that concerned my mother was that Jessica gained weight at an alarming rate. After a week of asking Jessica what she had been eating for dinner, my mother learned that meals consisted of high calorie, fatty foods and a lack of fruits and vegetables. In fact, while I was writing this paper, Jessica had called and during the conversation she mentioned that for lunch she ate hot dogs and cheese fries. In addition Jessica was living a sedentary lifestyle on the couch in front of the television.

A second issue that my whole family noticed was that Jessica would be more aggressive than usual when she would come home for visits. This prompted my mother to call Jessica’s psychiatrist. She found that Jessica had missed about half of her appointments.

Another issue my mother encountered was that Jessica appeared dirty, unkempt and had a body odor when she came home for visits. After having her cancer go into remission, Jessica lost the use of her left arm and hand. This condition makes it difficult for Jessica to completely care for her own personal hygiene and grooming. After my mother asked the staff at the group home about Jessica’s nightly hygiene routine, she found out they do not assist Jessica with these tasks.

On August 29, 2009, my mother went to see Jessica at the group home and to deliver school clothes and supplies. When she arrived she was appalled at the condition in which she found Jessica’s bedroom and bathroom. This led my mother to write a letter to both the group home manager and the state agency that licenses group homes. Among the problems my mother documented in this letter were dried vomit on Jessica’s bedding, mold and filth in Jessica’s bathroom, months old food in her room and dangerous cleaning products left in her room (Appendix). As stated earlier, since Jessica has very limited use of the left side of her body, she is not able to thoroughly clean her own room and bathroom. The group home has twenty-four hour staff coverage that should be responsible for assisting Jessica with these tasks.

John Burton believes, “ No amount of good intentions on the part of the managing organisation will translate into good care unless the Home itself is well managed from the inside… for good residential care to become an established reality, both ‘inside’ and ‘outside’ management must work together towards one goal – meeting residents’ needs” (Burton, xv). In the case of Jessica’s group home management this is not happening. Their goal is just like many other big corporation run group homes and that is “to maximise profits for the shareholders and/or proprietors” (Burton, 48). I am not suggesting that these corporations are wrong for making money being their top priority. What I am suggesting is that if a corporation chooses this line of business, they should not try to maximize profit at the expense of resident care.

If I could completely restructure how Jessica’s group home is managed I would change several things so that Jessica’s and all the other residents’ quality of life is improved. The main change that I would make is the creation of an advisory board for the group home. This advisory board would not be hired by the corporation that runs the group, but instead it would be hired by the county in which the group home is located. The board would consist of seven members. One member would be a representative for the company. One member would be an employee from the county. One member would be representative for the staff of group home. Four of the members would be advocates for each resident of the group home. The advocates could be a resident’s family member or if the resident doesn’t have a close family member, he or she could choose another person to be their advocate. This advisory board would make sure that the company and the residents are both satisfied with the group home.

The second thing I would do would be installing cameras in the common areas of the group home. These cameras would be on all day and would also be hooked up to a digital video recording device. The cameras would also be hooked up to the internet via a secure, password-protected internet connection for the residents’ families and the advisory board members to view at any time. The purpose of these cameras would be to make sure that the staff is doing their work and to ensure the safety of the residents.

The last thing I would change is the makeup staff that works inside the group home. The current staff consists of workers with little or no training in the field of care of the mentally disabled. The staff works long hours and are poorly compensated for the work that they are hired to do. This combination makes for a dreadful work environment for the staff, therefore the amount of time in which a worker is employed is not very long. This quick staff turnover makes it difficult for the staff and residents to develop enjoyable relationships.

To fix this problem I would require all future workers to have had one hundred hours of training in the area of working with the intellectually disabled. Also the staff would have to take a test at the end of each year on their training. If a worker fails the test, he or she would have to take a class for two weeks on working with the mentally disabled before returning to the group home.

I would also increase the amount of compensation that the staff would earn. The base hourly wage would be ten dollars an hour. The hourly wage is increased based on past work experience with the intellectually disabled, references and any other applicable skills. There would be a minimum of three staff members in the home between the hours of 9 A.M. and 5 P.M. There would also be a minimum of two staff members in the home between 5 P.M. and 9 A.M. No staff member can work more than nine hours a day and fifty hours a week. Also, since working at a group home can be a very stressful job, the staff would have a stress management counselor available to them at any time.

I would be content if the group home manager took even one of my suggestions to heart and made a positive change for the group home residents. Making a decision to place a family member in a group home is perhaps the most difficult decision a family can make. The family should not have to struggle with the fear of what life is like for their family member in the group home. Group home residents, regardless of their cognitive ability, have all the rights that any other citizen has. As John Burton so wisely points out, “…homes for people disabilities… do not have to be bad places to live: they can be – and occasionally are – the very best places for their residents to thrive” (Burton, Preface).

Works Consulted
Barron, James. “New York Cited In Warehousing Of Mentally Ill.” New York Times 09 Sept.
2009: 24. Academic Search Complete. EBSCO. Wev. 28 Nov. 2009.
Burton, John. Managing Residential Care. London and New York: Routledge, 1998. Print.

Cake Elmo More Please

We visited Busch Gardens Williamsburg again this weekend, and Ashley was even braver than she was during our last visit. She had very definite opinions about which rides she wanted to go on, and it didn't seem to matter that I was often skeptical.

And she really knows how to charm the ride operators too. When one of her favorite rides was over, she would bat her eyelashes, smile sweetly and sign 'again' at the ride operator. They, of course, would ask me what she was saying. I would explain, and they would immediately gush, "Of course you can!" She really knows how to work it, doesn't she?

Even though the rides were thrilling, the most exciting thing of the day rocked her world as we stood in line for lunch. Right there amongst the strawberry shortcake, cherry pie, and chocolate cake was the sweet face of Elmo smiling from the top of a cupcake. Needless to say, it ended up on our tray.

The rest of the day and night, even after we were headed home, Ashley kept signing, "cake Elmo more please." I hoped that she would forget eventually, but it didn't seem like that was happening. So today, once again her dear brother, Chip, came to the rescue.

As Ashley asked for what seemed like the 1000th time for "cake Elmo more please", Chip baked her some cupcakes and decorated them to look like Elmo. They weren't exactly like the ones at Busch Gardens, but this was one time that Ashley's significant vision impairment actually worked to our advantage. She recognized Chip's cupcakes as "cake Elmo", and life was once again quiet in our little corner of the world.

Thank you, Chip!

Thankful Thursday

This edition of Thankful Thursday is dedicated to my son, Chip. Chip graduates from high school this year, and I couldn't ask for a better son!



Today I am thankful...

• that Chip has a plan for his life and is acting on that plan. I realize his plans may change, but I have no doubts that he will adjust as necessary.


• that learning has come easily to Chip. With all the other 'things' in his life, not the least of which is being a sibling to three adopted children with disabilities, it is good that he didn't have to struggle academically also.


• that Chip serves as a wonderful role model for his siblings. They can see the results of committment and drive. They can see his success and hopefully realize that their success can be defined also by their actions.


• that Chip was accepted to the college of his choice and that the college is in our hometown. I wasn't quite ready for him to leave the nest just yet...


• for the scholarships that Chip has received. It takes a bit of the weight off my shoulders.


• for the awards and honors he received at his high school senior assembly yesterday, and that it really bothered him that not all his classmates received honors.


• for the levelheaded way he is managing his money and preparing for the unexpected costs and fees associated with starting college.


• that he has matured into a fine man, a man full of compassion and understanding, a man with a drive to make the world a better place.


• and that he still calls me 'Mommy', but don't tell him I told you that!

Thankful Thursday

Today, I am dedicating my Thankful Thursday list to my children in honor of Mother's Day. Today I am thankful...

• for the way Ashley leans against me and falls asleep for 10 minutes each school morning while we wait for her bus


• for the pride Corey displays when he is wearing his JROTC uniform. He deserves to feel proud of himself.


• that Chip offered to buy a week's worth of groceries for me for Mother's day. I said no, of course, but it was very sweet that he was willing to do it.


• that Jessica still calls me every single night, even if it is just to yell at me.


• that Ashley is still very much a Momma's Girl. All my children are growing up so quickly and it is hard to let go of the closeness of their younger lives.


• that finally after 4 years, Corey does seem to be an integral part of our family.


• for the sweet way Chip touches Ashley on her cheek each morning, even if she is being Miss Grumpy Pants


• that Jessica still tells everyone that she thinks I am beautiful


• that all my children are growing into fine people, people who care, people who I am convinced will make a positive difference in this world


• and finally, for the child I have yet to find but hope to bring home one day in the near future

Happy Mother's Day!

This and That - Good and Bad

Chip’s Dream

Chip, my birth son and my oldest child, got an acceptance letter in the mail yesterday from his first choice college. To say he is excited is an understatement. And, I hated to dampen that spirit, but unless RIT (Rochester Institute of Technology) comes through with a significant financial aid package, he won’t be able to go. Each year at RIT costs $37,000!!



I think Chip deserves this so much. He has shared his Mom with three adopted siblings with significant disabilities since he was five years old. He has always been supportive, caring, and understanding. He has seen his wants and needs often pushed aside to meet the needs and wants of his siblings. He has had his whole life turned upside down by the decisions I have made for our family, and more than anything, I wish I could make his dream a reality.

No More Bird Music

Back in March of 2007, I wrote about how excited I was when Ashley signed that she could hear the ‘bird music’ (birds singing). Given her hearing impairment, I was both surprised and thrilled.



This past Monday Ashley had another hearing evaluation. Previously, her right ear was evaluated as having a profound loss, and her left with a moderate loss. Monday’s results showed what I already knew – her little bit of hearing was deteriorating. The new evaluation continues to show a profound loss in the right ear, but the left ear now measures as severe to profound.

While we waited for the school bus yesterday morning, the birds were singing very, very loudly. I asked her if she could hear the ‘bird music’. She signed ‘no’….

Son Shine

How can this be? Just yesterday, I sat in my rocking chair, my tiny son at my breast, and wondering how I would ever cope as a single parent. I had finally convinced my abusive, alcoholic husband to leave, but in my darkest moments I wondered which was worse – staying in the abusive relationship or being a single parent. The answer came as I watched my dear son, Chip, grow and mature.

Today Chip is almost 18 years old. He will be graduating from high school this year, and he is excited at all the options his future holds. He is a really good man – kind, generous, intelligent, caring, and compassionate. He has grown up with three adopted siblings with disabilities, and he feels he is a better person for that experience. I agree with him.

I believe I made the right decision almost 18 years ago. Single parenting has been very difficult, but I need only look into my oldest son’s eyes to know that his peace is my peace.

I am so very proud of you, Chip, and I love you more than life itself.

The absolutely gorgeous photo of Chip was taken by the best photographer in the world - my brother, Carl, of Hampton Roads Photography.

He Gets It

One of the greatest things about my 17 year old son, Chip, is that he likes to share his world with me. Unlike a lot of teenagers, including my 15 year old son, Chip is not the moody, reclusive type of kid who seems to prefer the company of his friends at all times instead of time with his family. Chip does have his friends, friends who enjoy the same things he does – music, computers, and rockclimbing – but he seems equally as comfortable spending an evening with me and his siblings. Last night, for example, he really wanted me to watch a movie with him, a documentary titled “The Devil and Daniel Johnston”.

Daniel Johnston is an American singer, songwriter, musician and artist. He also is diagnosed with bipolar disorder and autism. According to Wikipedia, “His songs are often called "painfully direct," and tend to display a blend of childlike naïveté with darker, "spooky" themes. Johnston's earliest recordings present him singing in a high register. However, throughout the nineties his voice acquired a new character and tone and an altogether different style of delivery and diction. This may have been inspired by a mixture of the damage done by smoking, tooth loss and medication prescribed to control his disorder. His performances often seem faltering or uncertain; one critic writes that Johnston's recordings range from "spotty to brilliant”. And, his music has been acclaimed by David Bowie, Yo La Tengo, Sonic Youth, Eddie Vedder, Beck, Spiritualized, The Flaming Lips, Justin Furstenfeld, Bright Eyes, and Matt Groening. Kurt Cobain praised Johnston's work, and often wore a tee shirt featuring the cover art of Johnston's debut release, "Hi How Are You?" The frequency with which Cobain wore the "Hi How Are You?" tee shirt exposed Johnston to an even wider group of music enthusiasts.

I must admit, I don’t get the attraction to his music, and while the documentary was interesting and I hear, was hailed at the Sundance Film Festival, I didn’t view it as a major work of art. However, what was extremely important to me was Chip’s excitement at learning about Daniel Johnston and his acclaim despite a significant disability. Chip even asked if we could have Mr. Johnston perform at one of our support group family retreats.

I know I’ve written many times in the past about what a special kid Chip is, but his acceptance of people with disabilities, no matter how significant the disability, as a normal part of his life inspires me. Perhaps his acceptance comes from being the sibling of three people with significant disabilities, or maybe my advocacy has over time worn off on him, but whatever the reason, I believe he will be a force to be reckoned with in future years as a strong advocate himself. He gets it…he really gets it.