Gray is Good

One of the blogs I visit on a fairly regular basis is Ka’lalau’s Korner, written by Carl Schroeder. The tag line on the blog says “Ka’lalau’s Korner invites you to embark on your journey into Carl Schroeder’s philosophy.” Mr. Schroeder is deaf and believes that ASL and ASL only is the language of the deaf. Mr. Schroeder’s world is black and white. Anything non-ASL is gray. However, with that said, I do pop over to his blog every so often, even though I usually leave not smiling. One of his recent blog entries left me more perturbed than usual. The title of that entry is “Deaf School Bus Versus Special Ed Schoolbus.”

In his blog entry, Mr. Schroeder says “While I don't claim to have experienced as a Spec Ed student, I can only speculate from what I've read about children with cochlear implants (CI) riding on the Spec Ed schoolbus. I was also a Deaf Education teacher in a public school system that received the pupils from Spec Ed buses.” He then goes on to “compare and contrast Deaf and Spec Ed schoolbuses”.

I take issue with many of the things on his list, but the first item in the list especially irked me. At the top of his compare and contrast list is:

1.Deaf schoolbuses are full of children who communicate with each other. Spec Ed schoolbuses are full of children who are so diversely handicapped they do not communicate with each other.

I would like to invite Mr. Schroeder to ride to and from school with Ashley one day and see if his opinion changes.

• The boy that smiles when Ashley is boarding her school bus is communicating with her.



• The child that slides over in his seat to make room for Ashley is communicating with her.



• The little girl who reaches over to touch Ashley’s arm is communicating with her.



• When Ashley takes off her winter hat and throws it at the bus driver, she is communicating.



• When the aide on the bus cradles Ashley’s head during one of her seizures, communication is taking place.



• When the child sitting next to Ashley touches her chin after she burps (to indicate she should say Excuse Me), that child is communicating.



• When Ashley picks up the hand of another little girl on the bus who is crying as the bus pulls away from her mother, Ashley is communicating.



• When the children wave to each other at their home drop off points, they are communicating with each other.



• When Ashley kisses the bus driver’s cheek at the end of her bus ride, the communication is quite clear.

So, Mr. Schroeder, there is gray in the world and in that gray is a beautiful form of communication. Ashley is working very hard to learn and use ASL, but even without the fluency she will one day reach, she communicates quite clearly all day long – as do the other children on the ‘special ed bus’ about which you wrote, though "diversely handicapped" they may be.

Thankful Thursday

Today, I am thankful...

• for the time I got to spend last weekend with Lynnette and Brooke


• and for the time I also got to spend with my brother and his lovely daughter, Melody


• for the broccoli with homemade hollandaise sauce I had for dinner last Friday night


• for my cat, Kitty Carlysle, who has been snuggling with me on these cold winter nights


• for jellybeans


• that my next door neighbor, Mr. Baldwin, seems to be feeling much better recently


• for text messaging on my cell phone


• for my new washer and dryer


• that my brother is coming for a visit this weekend


• that my friend, Sharon, seems to have finally found her prince after way too many frogs!

Latimer on Day Parole

Last December, I wrote about Tracy Latimer, a 12 year old girl with cerebral palsy. Tracy's father, Robert Latimer was convicted in her death. Mr. Latimer appealed a recent decision by the parole board allowing him no parole. That appeal has resulted in Mr. Latimer being allowed day parole. He has served 7 years - 7 years for murdering his daughter. Here is a link to the story about his parole appeal and the decision:

Latimer Parole Decision

And, oh yea, as part of the parole decision, he cannot have responsiblity for anyone who is severely disabled. I feel much better about all this now (she said, sarcastically).

Sticks and Stones and Words Can Hurt

Although two bills introduced into the Virginia General Assembly this year have not yet passed, passage is looking good, and if they do pass, I will be very proud of my state. It’s hard for me to say such a thing because Virginia is ranked 47th out of 50 in services to people with disabilities. But passage of these bills would be a step in the right direction.

In both the House and the Senate, bills were introduced that would change the words ‘mentally retarded’ to ‘intellectually disabled’ in all references in the Virginia Code book (state laws). An impact statement for the change was completed, and the cost for wiping the reprehensible ‘mental retardation’ words out of the Code of Virginia would be $75,000. An agency name would have to be changed and letterhead and business cards would have to be reordered. That is all a small price to pay, in my opinion.

Do you think for another $75,000 we could do a brain-cleansing of all the people who continue to use the word ‘retarded’?

Dichotomic Press

I discovered two news stories this morning that caught my eye, but each one for very different reasons.

The first is a story about the two women who were used as pawns by the Iraqis to bomb a pet market on February 1st. I blogged about the event the day that it happened. Now US officials are making sure that we know the women did not have Down Syndrome as originally reported, but rather were suffering from mental illness. Excuse me, but what the hell difference does it make what their disabling conditions were? Does it make the act any less reprehensible that women with mental illness were used and not women with Down Syndrome? Why did the US and certain Iraqis feel it important to point out this distinction to us? I don’t understand.



Fortunately, the other story I read brightened my day and made me say “Wow”! According to the British TimesOnline, a color-blind artist who could only recognize black and white shades has learned how to paint with a full palette by “hearing” the hues he cannot see. Neil Harbisson, a Dartington College student is completely color-blind and has been fitted with a camera attached to a laptop, which converts color to sound. Absolutely amazing! I am not color blind nor am I an artist, but the geek in me covets this technology in an unhealthy way!

I Am Truly Humbled

This past weekend, my friend Lynnette and her lovely daughter, Brooke, welcomed me into their home and their hearts. I am forever changed by the time I spent with them.

Dear Lynnette,

Thank you so much for opening your home and your family to me this past weekend. Being able to spend the whole day with you and Brooke was magical! As I looked through all of your photo albums and scrap books, the history of your journeys with Brooke, it was impossible to not feel a part of your family. It was so exciting to see the progress Brooke has made throughout her school career so far, and to have such a wonderful teacher early on really set the foundation for Brooke’s future success. To see photos of your trips to Florida and the Bahamas, to see Brooke visiting with her birth family, and to see all your family and friends reveling in Brooke’s life was beautiful. You have never let Brooke’s disabilities hold back the fun and exploration of the world around her. You have provided her with so many unique opportunities, opportunities I know you and Brooke both will treasure for all the years to come. I feel honored that you chose to share those memories with me.

I am also very honored that you allowed me to take part in Brooke’s care that evening. Like my own sweet Ashley, if a person had only words to help them picture Brooke, those words would overwhelm. But seeing and experiencing the routines you have put in place, the joy you both experience as you move through those routines, makes all you and Brooke have to do seem effortless. Believe me, I know it is far from effortless, but your love makes all the work a joy rather than a burden.

Brooke is a very blessed little girl to have you as her mother, and you are a very blessed mother to have Brooke as your daughter. I believe the two of you were destined to be together before either of you were even born. I know the struggles you both face are extremely difficult, but I see a strength in both of you that will carry you through whatever life throws your way.

Your strength humbles me – your commitment inspires me – your love for Brooke brings tears to my eyes. You are my hero, Lynnette, and the example of the mother I hope to be.

Love,
Ashley's Mom

CMV Misconceptions

Maybe I expect too much. I thought teachers and other school workers would have accurate knowledge about some of the more common viruses and conditions one might expect to see in a school setting. Or, giving them the benefit of the doubt and assuming they don’t have the knowledge, I can think of no reason whatsoever that a school worker could not and would not research via the Internet a particular condition about which they might be concerned. But, as I found out yesterday, that is expecting too much. Or perhaps it is just easier to use lack of knowledge as an excuse for discriminatory actions. Whatever the reason (or excuse), it’s just plain wrong and inexcusable.

Rather than rant and rave about yesterday’s particular incident, which by the way has left me livid, I have decided to take the high road and use today’s blog entry for educational purposes. The following information comes directory from the New York Department of Health.

But, just for the record, if one fifth grader touches the hand of second fifth grader whose disabilities are tied to CMV being contracted while the second fifth grader was in utero, there is absolutely no need for the first fifth grader to have to wash his hands.

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What is Cytomegalovirus (CMV)?

CMV is a common virus that infects most people at some time during their lives but rarely causes obvious illness. It is a member of the herpes virus family. Other members of the herpes virus family cause chickenpox, infectious mononucleosis, fever blisters (herpes I) and genital herpes (herpes II). Like other herpes viruses, CMV infection can become dormant for a while and may reactivate at a later time. The virus is carried by people and is not associated with food, water or animals.

Who gets CMV?

Anyone can become infected with CMV. Almost all people have been exposed to CMV by the time they reach adulthood.

How is CMV spread?

Although the virus is not highly communicable, it can be spread from person to person by direct contact. The virus is shed in the urine, saliva, semen and to a lesser extent in other body fluids. Transmission can also occur from an infected mother to her fetus or newborn and by blood transfusion and organ transplants.

What are the symptoms of CMV infection?

Most children and adults who are infected with CMV do not develop symptoms. Those who develop symptoms may experience an illness resembling infectious mononucleosis and have fever, swollen glands and feel tired. People with a compromised immune system (such as AIDS patients or those receiving chemotherapy) may experience more serious illness involving fever, pneumonia and other symptoms.

Is CMV infection very serious in infants?

Approximately 10 out of every 1,000 babies born in the United States will have CMV infection; but nine of these will have no symptoms and one may have significant illness involving nervous system damage or developmental disabilities.

How soon after exposure do symptoms appear?

Although most people never develop symptoms after exposure, the incubation period appears to be between three and 12 weeks.

How long can an infected person carry CMV?

CMV remains in the body throughout a lifetime. Infected people may occasionally shed the virus in urine or saliva. Several studies have found that from three to 11 percent of normal adults and up to 50 percent of healthy children shed the virus in either urine or saliva. The virus rapidly dies once outside the body.

How is CMV diagnosed?

There are special laboratory tests to culture the virus but such testing is difficult, expensive and not widely available. Specific blood tests can be helpful to the physician in making a diagnosis or determining if a person has been exposed but the results are sometimes inaccurate.

What is the treatment for CMV infection?

In most cases, there is no treatment. An effective vaccine has not yet been developed.

Should an infected child be excluded from school or daycare?

There is no reason to exclude children who have CMV.

What precautions should pregnant women take when performing patient care or child care?

Pregnant women should practice good hygiene and carefully wash their hands after caring for patients or children. This is particularly important when handling diapers or having contact with the child's urine or saliva.

The risk of CMV infection in hospital workers is not greater than it is in others in the community and is probably low because of careful hand washing practices. In daycare centers, where hand washing practices may not be as good, there may be a greater risk of infection. In both settings, good hygiene and careful hand washing are the most important control measures. Pregnant women working in child care facilities should minimize direct exposure to saliva and avoid kissing babies or young children on the mouth. Hugging is fine and is not a risk factor.

Routine blood testing during pregnancy for CMV antibody is not generally recommended. Pregnant women should consult their physician on an individual basis regarding this issue.

What can be done to prevent the spread of CMV?

Good handwashing is the best preventive measure. Plastic disposable gloves should be worn when handling linen or underclothes soiled with feces or urine.

Thankful Thursday

Today I am thankful...

• For tradespeople (plumbers and such) that I trust enough to leave a key to my house waiting for them. I don't have to take off work just to meet them.


• For my new animal print patent leather flats


• For soup and grilled cheese sandwiches for dinner on a cold winter night


• For my sewing machine


• For people who use their car turn signals when they plan to make a turn


• That Spring is just around the corner


• For the woodpeckers I hear early each morning


• For ice melt - those little white granules that can be thrown down on a slippery walkway


• That I finally figured out how to put a little picture associated with my profile on Blogger


• For my new digital tire gauge - I'm really challenged when it comes to car maintenance but this device makes checking my tires simple enough for even me

Never Say Never

One of my newer co-workers came into my office yesterday and saw pictures of my children. He asked about them, and being the Mom that I am, I went on and on. He’s probably sorry he asked. However, one comment he made really threw me for a loop. He said in reference to Ashley, “It’s just so sad all the things she will not be able to do in life.” I was in shock for a moment, and my weak response to him was “Of all the words I could use to describe Ashley, sad is not one of them.” He soon left my office, but I spent most of the evening and half the night thinking about his comment – that’s probably because I have never really thought about what Ashley will not be able to do, but rather, I celebrate everything she does do, and it’s a very long list. So, in an effort to make sense of my feelings about my co-worker’s comment, I started thinking about the things in my life that are important, how I am able to do them, and contrasted those things with Ashley’s abilities. My conclusions were interesting.

First, there are not many things I can’t do, and the list of things I can’t do doesn’t really bother me. For example, I can’t change the oil in my car - I can’t go on rollercoasters because they scare me to death - I can’t peacefully coexist with camel crickets in my house - I can’t really do a good job of urinating while standing - I can’t sleep during a car trip - I can’t square dance - I can’t give birth to a litter of kittens - I can’t eat brussel sprouts - I can’t speak Spanish or French or German – I can’t tell a joke without messing it up - I can’t do a cartwheel, and I can’t wear socks while sleeping no matter how cold my feet are. I’m sure there are many other things I can’t do, but overall, I don’t feel my good life is jeopardized by that list of things I can’t do.

So how about Ashley? Well, she can do a lot of the same things I do. She can do her laundry – she can clean house – she can cook – she loves rollercoasters – she can love and express that love quite well – she can be quite opinionated and can argue extremely well – she understands the concept of exchanging money for goods and services – she can bowl – she can roll her tongue into a “V” (I cannot) – she can throw a ball really fast over her head – she can do a marvelous Donald Duck imitation – she can communicate when she is sick or tired or hungry – she can give herself her own medications through her G-tube – she knows which plants are poisonous and which aren’t – she can read and use a computer – she can operate the TV remote control and she can hide it so her brother can’t find it to change the channel from Sponge Bob Square Pants – she can tell the cats to stay off the furniture – and she can eat a pound of spinach leaves.

Actually, I can’t think of anything she can’t do. If she wants to date and marry, she’ll be able to. She can have children if she wants. She will be a very good caretaker for a child, and hopefully she will help care for me when I am old(er).

Oh yes, I did think of something she won’t be able to do – she won’t be able to drive unless there are some major technological changes in transportation. She has epilepsy and in our state that means no driver’s license – well, that and the fact that she is blind. Her brother, Chip, said that just means she will have to live in New York City because nobody there drives. And she can sure raise her arm and whistle for a cab.

Now I wonder just what my co-worker thought Ashley would not be able to do in her life because I can’t come up with much.

Oh, and if you are a first time reader and wondering what disabilities Ashley is tagged with, here is the list:

• Fetal alcohol syndrome


• Deafblindness (profound hearing loss in right ear, severe loss in left ear, totally blind in left eye, 20/2000 in right eye)


• ADHD


• Autism spectrum disorder


• Epilepsy


• Juvenile xanthogranulomas (a rare disorder that causes tumors to form – she currently has three brain tumors, and has had two in the past)


• G-tube for past feeding issues, now used solely for medications

This and That

THIS:

I work for a state government agency. The building in which I work is part of Capitol Square, so named because the State Capitol sits on a hill just to the right of my building. Around the square, which is actually more of a circle, also sits the Governor's Mansion, and several other state office buildings. I have noticed something about my office building, and several others on the Square - the buildings are not accessible. My building fronts a street with parking out front, and none of those parking places have been designated for people with disabilities. But, let's assume that one could find a parking space close by to accomodate a wheelchair lift out of the side or back of a van, that person still would have a very difficult, if not impossible, task trying to enter my building. There are no curb cuts.

At first I thought I must have just missed seeing them. Surely a state agency would have an accessible building. But I didn't miss them. They are not there. All tax-paying citizens are excluded from entering my state office building.

Two governors ago, our state had a lieutenant governor in a wheelchair. His office at that time was not on Capitol Square and was, I assume, accessible. It's a good thing that he is no longer the lieutenant governor because now the lieutenant governor's offices are in my building.

THAT:

Why is it so difficult for school districts to find qualified vision teachers? Is this only a problem in my area? Two of the largest school districts in my area have openings for itinerant vision teachers, and those openings have been available for quite some time. In my county alone, three full time vision teachers have been hired, stayed only a short while, and then moved on. Dozens of students in my school district who have vision services listed on their IEPs are receiving no services because there are no vision teachers. Just what is the problem with hiring and keeping qualified vision teachers? Any ideas?

Just Right

Goldilocks was very tired, so she went upstairs to the bedroom. She lay down in the first bed, but it was too hard. Then she lay in the second bed, but it was too soft. Then she lay down in the third bed and it was just right. Goldilocks fell asleep.

Ashley and I went mattress shopping on Saturday. Since I adopted her at age 2, she has moved from a crib to a fully-enclosed hospital bed to a mattress on the floor and then finally to a real bed about 3 years ago. Not knowing if a real bed was going to be the answer, I didn’t invest in new bedding for her at that time. Rather, I moved my mattress and foundation to her room, and I purchased a new set for myself. Since the set I put in Ashley’s room is approximately 25 years old, and since she is doing just fine in a regular bed, I decided that it was time she had a better mattress.

Many stores had sales on mattresses this weekend, so we set out early Saturday morning for some comparison shopping. The first store we visited, a high end department store, did have some good prices on their mattresses, and they offered delivery and removal of the old set. However, when we walked in, the salesman couldn’t stop staring at Ashley. He seemed frightened of her and would step away if we got too close. He never addressed her, but did ask me if I would like to try lying on one of the mattresses. I told him no and we left.

The second store we visited was a store that sold only mattresses and foundations. Again, their prices were good, but delivery would cost extra. The salesman at this store didn’t seem frightened by Ashley, but he would only talk to me – asking “Would she like to try the bed? What size bed does she want?, etc.” I thanked him for his time, and we left this store also.

The third store we visited was also a store that sold only mattresses, foundations and other bedding related items. As soon as we walked in, the salesman asked how he could help. I put my hand on Ashley’s shoulder as she sat in her wheelchair, and said, “My daughter, Ashley, needs a new bed.” From that point on, the salesman spoke directly to Ashley. Even though I was interpreting with sign, he still spoke directly to her, asking “What size bed do you want? Would a mattress that is not so thick be easier for you to manage for getting in and out of bed?, etc.” He asked her if she would like to try out some of the beds, and proceeded to move the mattresses around so she could get her wheelchair right up to the bed, making it easier for her to try it out. She tried one, signed “no”, tried a second one, again signed “no”, and finally a third one and signed “yes, sleep.”

Although the prices at the third store were a little bit higher, where do you think I purchased her new mattress? And, it wasn’t because she signed “yes, sleep” after trying the mattresses.

Sis Disaboom Baa

There are many reasons I enjoy blogging, but one of them is that I now feel connected to a community of people who share a common interest, a community of people who ‘get it’ when it comes to disability issues. I wrote in January about how isolating being a single parent of children with disabilities can be. Blogging has eased that isolation a bit for me.

Dr. J. Glen House is someone else who understands the value of community to people whose lives have been touched by disability. Dr. House founded Disaboom, Inc., the first interactive online community dedicated to constantly improving the way people with disabilities or functional limitations live their lives. I know that many of my readers are already familiar with Disaboom, but for those of you who aren’t, I strongly encourage you to visit. Disaboom is a comprehensive online resource for anyone with any type of disability, their families, friends, caregivers, employers, and support network.

According to the Disaboom website, “Disaboom.com strives to provide tools and guidance needed to live active, engaged lives. When it comes to sharing stories and personal insights, there’s nothing stronger than the power of community – which is why Disaboom.com is connecting the millions touched by disability to both information and each other.” The initial launch of the Disaboom website was great, but a new look was launched on Jan. 18, 2007 and includes new features such as photo sharing, grouping of social activities, personal network creation, and additional medical condition content.

Disaboom is guided by four core beliefs:

• Expertise comes in many forms.


• Knowledge is power — and so is community.


• You don’t have to be disabled to be touched by disability.


• The word “disability” may apply to us – but will never define us.

Again, I encourage all of you to visit and explore this very valuable resource. It will be a good use of what I know is your very limited time!

Chan-Man In The News

A wonderful article appears on the front page of the Richmond Times Dispatch this morning about Chancellor, the young man I wrote about back in January. I applaud the reporter for having the guts to tell Chan's story...

A Promise Too Late

(On Mother's Day last year, Chancellor Rice made a school project bouquet with paper flowers and pictures for his mother, Pam Rice. The top three photos show him signing "I Love Mom." Photo By: P. KEVIN MORLEY/TIMES-DISPATCH)

Thankful Thursday

Today, on this very cold but very sunny day, I am thankful...

• For oranges, grapefruits and other citrus fruits in wintertime. For some unknown reason, they taste like summer to me


• That three of my kids brought home all A's and B's on their report cards, and the other one only had 2 C's and the rest A's and B's. This is REALLY huge!


• That Big Brother and American Idol are back on television


• That the really strong winds we had last weekends knocked a lot of the dead branches out of the big tree in my front yard. Paying a company to do that would have cost hundreds


• When we have breakfast food for dinner


• For chubby, jolly babies


• For scented shower gel that leaves my bathroom and bedroom smelling wonderful all day


• That Miss Amy doesn't mind giving my children haircuts


• That for the first time in Ashley's school career, she has an academically-slanted IEP


• That I received my income tax refund this week. Now the kids can have new shoes!

Happy Valentine's Day, everyone!

Motherhood Personified

Sometime when you meet a woman, you just know she is meant for motherhood. Carla is that woman. When we first met, she was single but planning her future, a future which included marriage to her best friend and love of her life. She was finishing her education, and was headed to a job as a teacher to teenagers with the most significant of disabilities. Her soon-to-be husband, Martin, also worked with teenagers and young adults with significant disabilities. They both enjoyed volunteering with the Special Olympics, and their marriage seemed one that had been preordained.

Just last summer, I attended a baby shower for Carla. Like Carla, it was unconventional, loads of fun, and planned to the smallest detail to include and accommodate her friends with disabilities. That’s just the way Carla is – no one is left out and everyone is always made to feel welcome. Just a few short weeks after the shower, baby Hannah Abigail arrived in this world to the joyous arms of her mother and father.

Baby Hannah was a shining light of love – a daily celebration for her parents, aunts, grandparents, other relatives and friends. Though not a June Cleaver, apron-wearing, always baking type of mother, Carla was everything any real mother longs to be. Like Martin was perfect for Carla, Baby Hannah was perfect for her parents – again as if preordained. Life was one exciting, joyous moment to another for this little family of three, that is, until last week when Baby Hannah, only 7 months old, was called to leave her earthly family behind as she moved to Heaven.

At Hannah’s memorial service last night, the tears flowed freely, but thankfulness also filled the room. Everyone in attendance, the family and the friends, knew they had each been given a gift, a gift that was shared for 7 wonderful months. After the services, Carla stood and greeted each person individually. The perfect image of the Earth Mother of decades past, Carla wore her strength as surely as she wore her flip flops on her feet. Though from time to time, a few drops of that strength would surface on her trembling lower lip as she hugged the hundreds in attendance, and revealed her motherhood to everyone.

Carla will always be Hannah’s mother. And I believe she will also be the mother to Hannah’s siblings in the future. She nurtured Baby Hannah in her womb for 9 months, and then wrapped her in her loving arms for the next 7 months. To me, she is motherhood personified, and she is teaching me how to be a strong and loving mother myself. I love you, Carla. You are my hero.

Deputies Dump Paralyzed Man From Wheelchair

I first saw the following information posted by Penny Richards at the Disability Studies, Temple University blog. It was also featured on the Today Show this morning.

Brian Sterner, a quad, was stopped on a traffic violation on January 29th and taken to the station for booking. Deputy Charlotte Marshall Jones didn't believe he was really paralyzed, so she dumped his wheelchair forwards, and he (surprise!) fell to the ground. The incident was caught on the office surveillance camera (video below, but be warned--it's distressing to see), and she has been suspended without pay. Brian Sterner, it turns out, is the director of the Florida Spinal Cord Injury Resource Center, based in Tampa. He plays wheelchair rugby with the Tampa Generals, and he's working on a PhD.



Here's the news story as reported by the Associated Press

Routine vs. Unpredictability

I wrote the other day about the importance of schedules and routines for my children, both those with and without disabilities. I said “I believe that for children with special needs, such a structure and routine to their days helps cut down on anxiety and meltdowns.” However, no matter how organized I am, no matter how much I try to stick to schedules and routines, there will be times in our family life when such strict adherence just won’t work. And, there should be times when surprise and spontaneity are part of our life. Otherwise we would just be rather boring people, wouldn’t we? My problem is figuring out the balance – how to achieve the peace and security of routines while still leaving room for unplanned fun in our lives.

I watched a show on TLC (The Learning Channel) this weekend called “Jon & Kate Plus 8”. It’s the story of a family with one set of twins and sextuplets. I adore Kate and her organizational skills as well as her seemingly calm attitude when trying to corral 8 kids. It makes my life look like a piece of cake.

On the particular episode I was watching, Jon and Kate were taking the twin girls on a trip to New York to the American Girl store. The sextuplets had been left with babysitters. As Jon and Kate did their best to shuffle the twins from train to cab to walking and finally into the store, I could see the beginnings of meltdowns brewing in the girls’ faces. I, the rest of the viewers, and a bunch a New Yorkers didn’t have long to wait for the full-blown meltdowns to begin. At that point, Kate says into the camera “and this is why running your life completely by routine and schedules is not always a good idea.” Her twin girls were having a very tough time coping with the ‘fun’ in their lives. The new places, the new food at lunch, the strange people, the rush to move, was all just too much for children whose lives are normally structured by the clock, a clock which offers no surprises. And that is my dilemma. Unfortunately, neither Kate nor Jon offered any suggestions or clues as to how they would handle things differently in the future, if they even would.

Is an occasional meltdown an acceptable price to pay for the peace of consistency and routine? What do you think? Do any of you have a solution or a way to achieve a balance between the two extremes?

Change Long Past Due

Systems Change – a phrase that I have heard over and over again for the past 10 years. Most often, the phrase has been used in conjunction with overhauling the education of children with disabilities. I’ve heard it from University-based grant projects, state departments of education, and advocacy groups of all sorts. I’ve heard great ideas and lofty goals put forth by people who really do believe that systems change can and will happen. Unfortunately, I haven’t seen any systems change, and I find myself wondering why, especially when I am dealing with ‘systems’ that obviously need ‘change’.

I think one reason that systems change is slow to come, if it really does come at all, is that the organizations we are trying to change are each so very different from each other. I’ll use the example of school districts. There are dozens of different school districts in my state, and each one does things a little, and sometimes a lot, differently. Is hoping that they will all ‘be changed’ for the better, and once and for all start to do things the same way, a better way, just a pipe dream?

I’ll share one example from my school district – again, mine is just one of dozens across the state. The land mass of the county in which I live is shaped somewhat like an old telephone handset – a thin section in the middle and two lumps on the end. Residents refer to either the west end of the county or the east end of the county. As demographics have played out, the west end is home to more affluent citizens for the most part – citizens with access to the internet and the knowledge which comes from it, access to attorneys and other advocates, and most importantly, access to people like themselves who refuse to back down from a fight. The east end is home to less affluent citizens, many who farm or work blue collar jobs, people who often don’t have computers much less access to the internet, and people who have been conditioned through the years to believe that the county school district is all powerful. (I know these are generalizations and that not everyone fits the stereotype I have portrayed here – but overall, these are my impressions).

I’ve written previously about an IEP meeting held for my oldest daughter at one of the east end schools. Last week, yet another IEP meeting was held, and even though I did manage to get a couple of academic goals included in her IEP, the atmosphere was as I had written previously. However, this time I asked some specific questions about the disparities between the west end and the east end IEP process.

The day before my oldest daughter’s IEP meeting, I had an IEP meeting for my youngest daughter (they are 4 years apart in age). My youngest has more significant disabilities than my oldest, and has an IEP that major goals of math, reading, science and history. My oldest, on the other hand, has a few, very few, objectives relating to reading and the use of money, and that is it. When I suggested to the administration person at the meeting that I was confused given the IEP meeting just the previous day for my youngest daughter, she kept repeating the phrase the east end staff uses constantly – Jessica (my oldest) needs a functional curriculum not an academic one.

So here in just one county out of dozens, educational approaches are vastly different. Pool those dozens of counties together, and systems change does seem an unattainable goal. I’m not ready to give up on the idea of systems change, but I am leaning more strongly on the belief that systems change is only going to happen through legislation and/or litigation. The great ideas and lofty goals, I believe, will continue to flounder. I suggest that those people with the ideas and goals turn their attention to their lawmaking bodies. Convince a few powerful lawmakers, and systems change will happen in one lawmaking session.

How?

Candice from the I'm Adopting a Child with Usher's blog asked me some questions the other day, and I promised her I would blog my answer. Candice asked:

I have a question for you that I have found difficult lately. I know that you are a single working mom, how do you do it? Since we have had Rebecca, I can barely get in a 30 hour work week & I know that my coworkers are getting sick of me taking off all the time.

How do you work and have special need kids? Is your job understanding? What were your hardships, if any, with this?

I especially liked the part of the question “What were your hardships, if any…”. Believe me, the hardships are many and ongoing. I don’t think there has ever been a time when being a single working mom, especially with kids that have severe disabilities, has been easy. But, I have found some techniques along the way that have helped me remain sane. I’m happy to share these and hope maybe someone else’s journey through motherhood might be made a little easier as a result.

First, just a little background info. Most of you know I have 4 kids, three who have disabilities, and those three are adopted. My oldest son is 17 years old and is my birth son. The other children are 17, 15, and soon to be 13. I have worked for a state government agency for the past 22 years in the computer field, and with a little luck and an upswing in the economy, I will be able to retire from that job within the next 10 years.

When I adopted my first child, Ashley, I took her from her foster mom’s home straight to a visit to the neurologist. One of the first things he said to me was ”You must have quite an obsessive/compulsive personality.” I chuckled, but at the time didn’t really understand why he said that. Now I do. Those obsessive/compulsive tendencies have been a real source of strength for me along my parenting journey.

OK, here’s what has worked for me:

• Organization. I resolved early on to keep all important paperwork related to my children neatly filed away and easily accessible. It took some time in the beginning to work out the best filing system, but now having it in place takes almost no time at all to keep paperwork organized. I set up a filing cabinet per kid. There are places for adoption paperwork, medical history, reams of school documentation, and then a whole drawer for memory items. I have major categories within each of those areas, for example, IEPs, assessments, etc. or vision testing, audiological reports, etc. So, when I need a piece of documentation, I know exactly where to look – and that is quite a time saver.

• More organization. I find that even the little things like going to the grocery store each week can be a challenge. I certainly don’t want to take all the kids with me. If I did, we’d probably be eating nothing but Cheetos and chocolate chip cookies. But, paying for a babysitter so I can go grocery shopping just increases the grocery bill in a way. So my challenge is to get what I need from the store and get it quickly. If I can do that, I can do my grocery shopping at night after the kids are in bed (leaving my oldest in charge), or even on my lunch hour during the work week. To accomplish this, I prepare a menu of dinners for each week. I list the main course as well as the sides. I make that menu based on what is on sale at my grocery store each week. I check their flyer online, make my menu, and from that, make my shopping list. I make sure the shopping list is organized (there’s that word again) the same way the store is laid out. That means I make one quick pass down each aisle, pick up what I need, and get out and back home.

• And even more organization. One area of family life which can cause a lot of problems and could seriously affect meeting schedules is getting ready for school in the morning. I don’t have time 10 minutes before the bus arrives to be searching for shoes, socks, last night’s homework, etc. So, each school night, each child must pick out what clothes they want to wear the next day, put those, along with their socks, shoes and a jacket if needed on the far end of their closet, ready to be snatched up in the morning and thrown on. Also, backpacks must be packed and lined up at the door. Lunches need to be made and stored on the refrigerator shelf, and each lunch sack is a different color so no one gets the wrong lunch. Any papers which might need signing, or money that is needed for a school outing must be requested the night before. It only takes missing one field trip for a child to learn this schedule.

• Chores. Each of my children, no matter their disability, has chores to complete. It’s just a fact of our family life that everyone needs to pitch in to make things run more smoothly. The kids have learned that if things run smoothly, mom is happier and there is more time for fun. In the beginning, I provided chore charts so no one would forget what their assigned chores were. It didn’t take long for those charts to disappear as each child’s level of responsibility grew. Corey is responsible for taking trash and recycling to the curb weekly, filling the pet food dishes, and cleaning one of the bathrooms. Chip is in charge of yard work, heavy home maintenance (things like cleaning gutters and touch up painting), moving things to and from the attic and shed, and washing the car. Jessica and Ashley have to straighten up the family room each night before bed and help with meal prep and cleanup. Each child is responsible from the age of 12 for doing their own laundry. I assign days and times for each one to complete their laundry so they are not all vying for the appliances at the same time.

• Medical "things". One of the hardest things for me as a single mom is getting each child to their medical appointments, and I’m talking a lot of appointments given the severity of their disabilities. Over the years, I have gotten a little better at this. I found a pediatrician’s office that has hours into the early evening and on the weekends. That means less time off from work. For other doctors, I try to schedule their appointments as late in the day as possible, again meaning less time off from work. For visits to places like the eye doctor or dentist, where each child has to go, I insist on back-to-back appointments all in the same day. That is much better than taking time on four different days. I have tried to schedule the therapy appointments for both girls at the same time so that one could be having physical therapy at the same time the other was having occupational therapy. All this takes some advance planning and guarding my master calendar like it is gold, but for me it has been well worth the effort.

• Extracurricular activities. Since the kids all want to do activities other than school work and chores around the house, I have also had to figure out schedules for that. I do have a rule that each child cannot be involved in more than one extracurricular activity at a time, and it really helps if two or more can be involved in the same activity. For example, Ashley likes swimming lessons at our YMCA. While we are there, the boys can play basketball or pool, and Jessica likes taking part in teen craft activities.

• Schedules. I have taught all my children from an early age how important schedules can be (there’s that OCD part of me again). They get up at the same time each day, eat meals at the same time, get shower time in the same order and at the same time each day, and go to bed at the same time each day. I believe that for children with special needs, such a structure and routine to their days helps cut down on anxiety and meltdowns. And, the most important part of all this is that I make sure I work some ‘me’ time into that schedule also. The kids go to bed pretty early, at least on school nights, and I have an hour or two to myself to read, watch TV, chat on the phone, etc. It really helps me recharge.

• Medical emergencies. No matter how good a schedule we have, a medical emergency can throw a monkey wrench into everything. And, we have our share of medical emergencies. But, I even have a few techniques that help there also. For example, I keep envelopes on the back of the door which contains each child’s pertinent medical information and history. The document lists things like birthdate, address and phone numbers, insurance information, diagnoses, medicines and quantities, and every doctor’s and hospital’s address, phone number and fax number. Should an emergency occur and a visit to the hospital is needed, an envelope can just be grabbed off the back of the door. With multiple kids, keeping all the details in my mind wasn’t working, and I didn’t have time to go to the filing cabinet to retrieve information.

And then finally, there are two really big things that help me and my family make it through the week, and help me keep my job even though I have to take a lot of time off. First, I have help. After years of going this journey alone, I was finally able to lobby for and get Medicaid (the insurance my adopted children have) to pay for an aide for Ashley and additional help for Jessica. This help makes a huge difference. I have written many times about Amy, Ashley’s aide, and about what a wonderful and valuable part of our life she is. For any family who has children on Medicaid, I urge you to pursue such services. Don’t get discouraged if you are turned down the first time. Keep fighting, and learn all you can about your state’s available services.

The other thing that makes a difference for me is my job. Having been employed at the same place for so long, I do get a lot of vacation, sick, and family sick time. I still have to budget that very well to make it last through a year, but so far I have not had to go off payroll. And, being in a computer job, I am able to work from home sometime. I am very, very blessed to have this job and for the fact that my supervisors are flexible and understanding.

I think those are the high points. Boy, Candice, when you asked the question, I bet you didn’t realize I would get so wordy. Talk about efficiency, you have now just spent an inordinate amount of time reading all this. At least I hope it was worth your time!

Thankful Thursday

I had almost decided to forego my usual Thankful Thursday post today because I just received some very tragic news. The 6 month old daughter of a dear friend passed away in her sleep last night. The only news I have so far is that little Hannah may have had cardiac arrest in her sleep, but the family is awaiting autopsy results. I am angry at God right now, and cannot understand why so many children to whom I am connected have had to die. In light of those feelings, I do feel compelled to try to find 10 things for which, at this very moment, I am thankful.

I am thankful...

• that my faith is strong and even though I don't understand and am angry, I still trust God and His wisdom.


• that my children are safe and well


• that my friend, Carla, has a wonderful husband and a large family on whom to lean during this difficult time


• that Carla had her beautiful little daughter for 6 months


• for my friends, my family, and everyone who helps me find strength during difficult times


• that I have plans to spend a weekend soon with Lynnette and Brooke


• for beautiful, warm and sunny days in the middle of winter


• for rainbows at funerals


• for every good thing in my life and the lives of the people I love


• for every breath I take

A Perfect Toy

One of my favorite bloggers, Casdok, at the Mother of Shrek blog, has a really fun post today about Legos. My Ashley loves Legos - always has - from the time I brought her home at age 2 and even now at 12 years old. She doesn't build the kits that Lego sells, but rather creates her own masterpieces. At times, she has even surprised me with some particular piece of knowledge I didn't realize she had - all by building with Legos.

For example, a few weeks before Christmas several years ago, while the rest of the family was setting up the Christmas tree and other holiday decorations, Ashley decided she wanted to play with her Legos. So, she went into the family room and started building (stairs are one of her favorite things to build). A little while later, when I went to check on her, I found that she had only been building with her red and green Legos. She had separated those two colors out of the large basket of blocks, and in her own little way, was making Christmas decorations for the family!

Even before that, when she was very little, she loved to stick her Legos into the holes on the baby gate that I had positioned at the door leading outside from the family room. She made beautiful patterns in the honeycomb holes. Until that time, I had no idea that she could even see well enough to make patterns, or even understood the concept of patterns.

She has spent many years exploring how to play with Legos, and she has found that building structures with them is not the only fun. She has worked on many concepts related to childhood development by pushing the blocks through the windows on her dollhouse and then opening the little door to find them again; by lining them up sometimes in color order, sometimes in size order; by trying to fit little ones onto big ones and by trying to connect them in ways they were not intended to be connected. She loves to build structures that have 'windows' in them through which she can stick her fingers and wiggle them. And, she has discovered that Mommy makes a funny sound when she thows a whole pile of them up and over her head.

I personally think they are the perfect toy. But, they have also been adapted to be an educational tool. Tack-tiles were created by a father whose son needed to learn Braille. The son loved Legos and with just a little modification, the father created a Braille learning system that combined his son's favorite toy with a concrete method of teaching an abstract concept.

We keep a large basket of all different size Legos out in the family room all the time. You just never know when an urge to create something will hit!

Reassurance

Our trip to the University of Virginia yesterday for a second opinion on Ashley’s seizures and brain tumors was well worth the trip.

Ashley and I had a relaxing morning at home. I kept her home from school because I knew she would need to be well rested for the trip, mainly because we would be home past her bedtime. She slept in until about 10am, and I relaxed by watching some of morning TV, shows I never get to see since I work during the week.

We left at 1:30pm and headed west to Charlottesville, Va. The map that the hospital had provided was excellent, and finding the office building was no problem. The first pleasant surprise I encountered was how warm and welcoming everyone was. As we pulled into the handicapped parking space, a crew of maintenance workers greeted us and told us to have a good day. After helping Ashley into her wheelchair and entering the building, the person at the receptionist desk smiled and greeted us also. The neurology office was just down the hall, well-marked, and easy to locate. Although the waiting room was crowded with children and their parents, the atmosphere was one of calm not anxiety. The person at the registration desk moved quickly to get us registered, and actually had many of the questions already answered (information provided by Ashley’s pediatrician). While I finished the registration process, Ashley was ushered into a small room by a woman with a big smile and crazy hair of many colors not found in nature. Ashley was deemed to still have a heartbeat and blood pressure about the time I finished with registration.

Because the waiting room was crowded, I thought we should settle in to a quiet corner and prepare to wait a while. But, we were immediately taken back to a doctor’s office. The doctor was very young, and as we found out later, was a resident. Her job was to record as much prior medical history as possible. She was a hit with Ashley because she had her identification badge on a necklace of beads of many shapes and colors, AND, she let Ashley hold it. Like everyone else we had met up until this point, this young resident was warm, friendly, relaxed and quite thorough. And again, that calm and relaxed atmosphere kept Ashley’s anxiety to a minimum.

After recording 12 years of medical history with the resident doctor, the actual neurologist we had been scheduled to see came to the room. He was an older gentleman with impeccable manners. He shook hands with Amy and me, and then sat directly in front of Ashley and shook hands with her. She was quite charmed by him and cooperated well as he poked and prodded. As with the rest of the staff, his calm, quiet manner relaxed us all, and I have never seen Ashley more comfortable in any other medical setting.

I explained that I was seeking a second opinion because I wasn’t comfortable with the approach of adding medicine upon medicine to try to control Ashley’s seizures. Although our neurosurgeon in Richmond had told us that he didn’t believe the seizures were a result of the three brain tumors Ashley has, I needed to hear that from someone else. I needed reassurance that we were indeed heading down an appropriate path, and if not, I needed suggestions on another path to pursue. The doctor agreed with me that a second opinion was warranted given that significant changes had been occurring in Ashley’s seizure patterns for the last year. And, he did agree with most of what our Richmond doctors were doing.

The UVA doctor agreed that surgery should not be done on the brain tumors at the moment. He agreed with the Richmond neurosurgeon that periodic MRI scans should be done to note any changes with the tumors. He also agreed that the Richmond neurologist had been following a medication course that he would have also followed. He reassured me that we should be able to reduce and/or discontinue some of the medications at some point, and that it was not unreasonable of me to expect that Ashley could get back to the seizure-free state that she had enjoyed for several years. He did, however, couch all that by saying Ashley has some rare conditions, something I already knew. And, that working with those rare conditions was often like being a detective. Things would be tried that wouldn’t work, and time might be needed to find the right solutions. So, up to that point, his statements of direction were following what Ashley’s Richmond doctors had been doing, and that was reassuring to me. But, he did introduce a couple of new items to consider.

Although Ashley has many behaviors that would indicate autism, she has never formally been given that diagnosis. The UVA doctor felt she should have that diagnosis. In addition to providing a more complete picture of her medical conditions, he felt it would help in her educational setting to obtain appropriate services. Of course, since we had not discussed educational services up to this point, he really had no way of knowing whether or not she was receiving appropriate services. In theory, and because autism is a disability that continues to receive a great deal of attention in schools, the press and the lawmaking bodies of our county, having a diagnosis of autism could potentially help Ashley access more services should she need them. But, as Amy (Ashley’s wonderful aide) so wisely pointed out, classifying Ashley primarily with a diagnosis of autism might actually have the opposite effect on educational services. The services which she and I have fought long and hard to obtain based on Ashley’s diagnosis of deafblindness might actually be at risk or at a minimum, lost in the mix of educational placement. So, this is a point that I will need to consider more thoroughly. I have always been an advocate of children receiving the services they need regardless of the labels imposed upon them, but I must ask myself if a label of autism would make receiving appropriate services less of a battle.

Secondly, the UVA neurologist asked a lot of questions about headaches. Did Ashley have headaches – did she exhibit behavior which might lead us to believe that? Based on his observations of her and the medical information I shared, he leaned strongly in the direction of thinking headaches are an issue for her. He told Amy and me what things to look for to confirm that thought, and if down the road we feel headaches are an issue, he suggested a medication that would help.

I left the appointment and Charlottesville feeling better about the approaches taken by our Richmond doctors, and have some hope for a less-medicated future for Ashley. As the UVA doctor said, Ashley is a medically-complicated child, but she is also vibrant and funny and charming and loving and smart. I believe the folks at UVA saw that yesterday, and I believe they have the same hope for her future that I do. Assuming that I haven’t totally offended our Richmond doctors by seeking a second opinion, I believe that the two teams of doctors combined with the excellent support Ashley has at home and at school can continue to help her realize her dreams. The one thing we have noticed during this time of increased seizures is that Ashley has not regressed on any of her previously-learned skills. In fact, she is making bigger gains now than she ever has, and that is, in my opinion, testament to the excellent support she has.

So, thank you Amy for all you do and especially for whispering in Ashley’s ear yesterday and making her laugh!

Thank you UVA doctors, nurses and other staff for making our experience yesterday one of the best we have ever had in a medical facility.

Thank you Richmond doctors, nurses and other medical staff for your continued attention to Ashley’s unique medical needs.

Thank you friends and families who continue to support me during these times of indecision, questioning, and worrying.

I think there is a reason that one of the first signs Ashley learned was the sign for ‘thank you’. She knew she would have many, many opportunities to use it!

UVA-Bound

Today, Ashley and I head to the University of Virginia, Kluge Children's Hospital, for a second opinion on her brain tumors and seizures. Please keep us in your thoughts and prayers as we embark on this journey to hopefully finding some answers.

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