The Most Beautiful Word in the World

“MOM” – the most wonderful sound I have ever heard! I mentioned in an earlier post that Ashley was working very hard on learning to say some words using the Tadoma technique. Amy, her aide and best friend, has been working so hard with Ashley to teach her to say the word correctly. Amy infuses every activity that she and Ashley do with some sort of speech therapy, and it has paid off! Ashley can now say “MOM’ perfectly! Just the other night at dinner, Ashley signed “cookie please” and followed the sign with the spoken word “MOM”. Do you think I jumped right up from the table and got her that cookie – damn right I did!!

Thank you, Amy. Thank you, Ashley. I love you both!!

Deafblind Triplets on Dr. Phil Show

On, Wednesday, February 28th, Dr. Phil is featuring a family with triplets who are deafblind. My TIVO is set! Here is the info from the Dr. Phil website:

Most parents find raising a child overwhelming enough, but imagine if that child could neither see you, nor hear you. Now imagine having three children like that. Liz is the mother of the only known deafblind triplets in the world. Her three daughters are now 6 years old, but one of the girls is able to communicate at a 2-year-old level, and the other two at only 10-month-old levels. Liz's world is consumed with their 24-hour care, plus the care of her oldest daughter, who is 10 and often times overlooked among the chaos of the triplets. After years of dealing with the girls on her own, a new man stepped into Liz's life to fill the shoes of her ex-husband. George thought he could become Liz's hero, but their relationship has been strained from the start and the stress is tearing them apart. See what a day in Liz and George's lives are like, and the surprises Dr. Phil has in store for them. Plus, meet an inspirational woman who says her world turned from light to dark at the age of 15. She's got a message for George and Liz. Don't miss this heartbreaking and heroic story

The Puberty Blues

I never invited you into my daughter’s life. I knew that eventually you would show up, but I was so not looking forward to that time. I knew that turmoil would accompany your arrival, and that Ashley’s life as well as mine would be forever altered. You make her both grumpy and sad, and you cause her physical pain as well. She is confused and doesn’t know what to think about these new feelings she is having. One minute she is happy and giggling and the next she is sobbing. Sometimes she will want to hug and kiss me and tell me how much she loves me. And then other times, she acts like she doesn’t want to have anything to do with me. You make her want to eat chocolate and Cheetoes three times a day. You make her agonize over what to wear and how to act. You are the reason her face breaks out and the reason that somedays she would just like to stay in bed all day long. Because of you, the seizures she previously had controlled with medication, are now occurring on a regular basis. And, you will spend the next 40 years doing the same things over and over again.

Reluctantly I admit, there are some good things about your arrival. My baby, my little girl, is turning into a beautiful woman. All that is good and compassionate in her will grow and become even stronger. Hopefully one day, because of you, she will find the man she wants to marry, and she will give me beautiful grandchildren, miniature versions of herself.

I know you had to come, but I just wasn’t ready to admit that. Just promise me one thing – go easy on Ashley and please go easy on me.

Say 'Ahhhhhh'

For the most part, I have been very blessed to find medical professionals who do an excellent job of providing care and offering support to Ashley. I can say without a doubt that most of the doctors and other healthcare staff we see have never treated a child with Ashley’s unique combination of disabilities. They have been very open, however, to research on her disabilities and to listening to me.

None of the doctors we see, and there are quite a few, have ever told me that they have treated another child with deafblindness. They all have said they have never treated a child with juvenile xanthogranulomas, a condition that causes tumors to form – on vital organs, on the skin, under the skin, on Ashley’s eyes and ears. She has already had two brain tumors removed and her gall bladder removed due to a tumor. Even the dermatologist we see had to look up the condition in her medical reference book, a book which detailed it as an extremely rare condition and based on its description in the book, Ashley had one of the worst cases ever documented. Throw into that mix ADHD, fetal alcohol syndrome, and a few other things, and doctors find themselves treating a very unique child. And, they are doing a wonderful job! But, I have learned some lessons along the way that have made it easier for the doctors and nurses to do their jobs, easier for me to provide the daily care that Ashley needs, and most importantly, easier on Ash. I will share some of those things in the list below, but I would love to hear from others about the lessons they have learned in parenting their children with disabilities.

1. Always be honest with your child about what is going on and about what is going to happen to them. Communicate, communicate, communicate – even if you think your child isn’t understanding what you say. The tone of your voice, your calm approach, your soothing hands will all help to keep your child calm during medical visits and procedures. I always tell Ashley (with both my voice and sign language) when we are going to the doctor and why we are going to the doctor. I also will touch the parts of her body that the doctor will want to see or touch. For instance, if we are going for a visit to check on an ear infection, I will touch her ear and tell her that the doctor is going to look in it. I will tell her that nothing on that particular visit will hurt. However, if I do expect a procedure where something will hurt or be invasive, I do tell her. When it is time for shots, I say and sign that she is going to get a shot and that it is going to hurt for a minute. I tell her that before we get to the doctor’s office, and I tell her again just before the shot is administered. I tell her it is ok to say ‘Oooow’ or to cry. Never let your child be surprised.

2. Practice what might happen when visiting the doctor. For instance, when Ash was younger, she was very reluctant to let the doctor look in her mouth. She wouldn’t say ‘Ahhh’, but would in fact clamp her mouth shut. So, when we were not at the doctor’s, we would practice opening our mouths and saying ‘Ahhh’. It turned into a fun game, and the next time we visited the doctor, Ashley had no problem sharing her new skill. We have also practiced taking deep breaths – the kind of breaths doctors need a child to take when they are listening to their lungs. Again, practice at home, make a game of it, and the next doctor’s visit will be an opportunity to ‘play’ that game.

3. If your child is deaf and/or blind, make sure the doctor understands that you will need to help communicate. The doctor should talk about everything that he or she is going to do, and then as a parent you can communicate that to your child in the way you feel is most effective. The doctors we see never rush, but if you do have a ‘quickie’ doctor, insist that they slow down enough for you to communicate to your child what is going to happen. If your child is sensory defensive and doesn’t like to be touched in certain ways or by certain people, let your doctor know that up front. Instruct the doctor on the best way to approach your child. I honestly believe a good doctor will appreciate the information because it will make their job so much easier.

4. Don’t allow a doctor or nurse to talk to your child as if he or she is a baby (unless of course, they are a baby!). Nothing rankles me more than to have a doctor or nurse talk in baby talk to my twelve year old. You may have to sweetly remind the professional that your child is almost a teen and that she will understand better if spoken to in an age appropriate manner.

5. Unless you know for a fact that your doctor always stays on schedule, taking a bag or backpack of your child’s favorite toys, books and games can help pass the time and prevent an impatient meltdown.

6. If your child has to stay overnight in the hospital, make a sign to put either on the hospital room door or on the hospital bed that explains in short, concise language how best to work with your child. For instance, I put on Ashley’s sign the fact that she is deafblind and that no one should just walk up and start touching her without announcing themselves to her first. I also list things like “champion IV remover”, “escape artist”, and other descriptive things about Ashley that may not be reflected in her medical chart. Hospital staff changes constantly, and you may not always be there to explain these special situations to them.

7. Does your child often have medical problems which require an ambulance come to your home to transport her/him to the emergency room? If so, make sure you have important information like insurance info, medications, and specific medical conditions documented and within easy reach. I keep two sheets of paper that contain all that information as well as the name and phone number of every medical specialist that Ashley sees in an envelope taped to the back of my front door. When the ambulance staff or fire department staff (they are often the first responders in my area) arrive, I can hand them that envelope and they have all the information they need. I have also made a small book of sign language signs that the first responders will likely see when they are helping Ashley. If your child communicates via a method other than speech, you should consider how you are going to facilitate that communication in a stressful situation involving ambulances.

8. And finally, another tip I have learned regarding emergency room visits, if you take your child to the emergency room yourself, you may have to wait a long time to be seen. You will be sitting in the waiting room with a lot of other ill or injured people. The stress level of that combined with whatever issue brought you to the emergency room will almost guarantee a meltdown by your child. And, my experience is that emergency room staff doesn’t always care if there is a meltdown. It will NOT get you seen any sooner. However, if an ambulance brings your child to the emergency room, they are taken immediately back to the ER treatment area and not left to sit in the waiting room. Given the seriousness of your child’s issue as well as their response to the long wait in the waiting room, calling an ambulance might be something you want to consider.

I’ll stop the list here, but again, I would love to hear from other families about the tips they may have. There are many difficult times that families will face when one of their family members has special needs, and finding appropriate medical care is one of the most critical. As I said at the start, I have been very blessed to find a cadre of wonderful doctors and nurses. My final tip is, when you find someone that is wonderful, make sure to thank them over and over again!!!

Now I Lay Me Down To Sleep

Caring for a medically fragile child is one of the hardest things parents will ever face. Although keeping up with medicine schedules, feeding schedules, and all the required doctor and therapy appointments can be tough, the most difficult thing, in my opinion, is being afraid to sleep. Sleeping might mean that you miss the seizure that could stop your child from breathing. It could mean that the reflux you deal with pretty well during the day causes your child to choke on their own vomit. It could mean that your non-verbal child isn’t able to let you know that their fever is spiking to dangerous levels or that their pain has reached an unmanageable level. Sleep could mean the difference between life and death for your medically fragile child. So what do parents do?

Parents cope the best way they can. For a married couple, it might mean one sleeps while the other remains vigilant. For the single parent, it might mean sleeping in the same room with the child and hoping that exhaustion doesn’t cause you to sleep so soundly that you still might miss an important signal. It might mean keeping a video and audio monitor on your child 24 hours a day while you sleep in short bursts – naps really, not genuine restful sleep. One family I know had a special device installed on their child’s bed to alert them to seizure movement. An alarm would sound in the event of movement that was not simply rolling over in bed. Another family had a window put in the wall between their bedroom and their child’s bedroom. All these devices and techniques may help some, but I can almost guarantee that the parent(s) still do not get a restful night’s sleep - EVER.

Although Ashley’s health has improved greatly in the last few years, I still fear a sound sleep. I am still using the napping technique – never sleeping more than an hour to an hour and a half at a time. If Ashley has not woken in that time frame, I get up and check to see that she is still breathing. My body is so trained to that nap schedule that even if I am out of town without Ashley or if she is spending the night in the hospital, I still wake every hour or so. I wonder at this point, after 10 years of this nap/sleep world I have, if I will ever be able to sleep 6-8 hours straight.

Exhaustion becomes a way of life, and unfortunately health problems for the parent can follow. For some families, services may be available to have a nurse or aide sit with their child during the night. But I believe that for the majority of parents of medically fragile children, no services exist to ease their exhaustive lifestyle. So, if you know of any families like this, the best gift you could ever give them is a night or two of sleep. Ease their fears for a short while and they will be eternally grateful.

Deafblindness in the News

The Virginian Pilot newspaper, the daily newspaper for the Tidewater Virginia area, carried an article yesterday on deafblindness. The article can be found here.

The reporter did a good job writing this article - not a lot of depth of information, but at least enough to raise awareness. The conference, unfortunately, is being organized by a group of four frustrated parents, and will feature some 'experts' whose opinions are not the most well-respected in the deafblind community. I worry that teachers, administrators and other professionals who might attend will feel the anger and frustration and will leave with a negative opinion.

One of the most difficult things for very frustrated parents, in my opinion, is finding the balance between collaboration and effective advocacy. I wish there was a magic formula for that, but unfortunately there is not, and a negative result could be worsening relationships between parents and professionals. The children, I fear, will then bear the brunt of those poor relationships.

I hope things go well for these parents and for the conference and that the result will be an increased awareness of their children's needs.

Can You Feel Me Now?

Since birth, Ashley has been significantly hearing impaired. Audiologists have consistently gotten readings that indicate she has a profound loss in her right ear – that means she doesn’t hear anything at all in that ear – and a severe to profound loss in her left ear. In the left ear, she can pick up a few sounds but definitely not any of the ‘soft’ sounds like ‘S’, ‘SH’, ‘TH’, ‘CH’, etc. Because this significant loss has been present since birth, Ashley has had an extremely difficult time learning to speak. In fact, I wouldn’t really call the few sounds and words that she does utter SPEECH. But, that doesn’t in any way diminish my desire to hear her speak a few words, and that list is topped by ‘MaMa’. So, I did some research and uncovered a method of teaching a person who is deafblind to speak. That method is called TADOMA.

TADOMA, as described by Wikipedia, is a method of communication used by people who are deafblind, in which the person places his thumb on the speaker's lips and his fingers along the jawline. The middle three fingers often fall along the speaker's cheeks with the pinky finger picking up the vibrations of the speaker's throat. It is sometimes referred to as 'tactile lipreading', as the person who is deafblind feels the movement of the lips, as well as vibrations of the vocal cords,

The theory is that the person who is deafblind will be able to feel the vibrations, the positions of the lips, the air expelled, and other such physical cues, and from that might be able to learn to speak. The Tadoma method was invented by American teacher Sophie Alcorn and developed at the Perkins School for the Blind in Massachusetts. It is named after the first two children to whom it was taught: Winthrop "Tad" Chapman and Oma Simpson.

And although I have been using the Tadoma method with Ashley for several years now, we have met with very limited success. Like any skill that is being taught to a child with deafblindness, consistency and repetition is key. I use the method at home with Ashley as does her aide. We also had a speech therapist at Children’s Hospital for a couple of years who would use Tadoma. Unfortunately though, in one of the environments in which Ashley spends a huge amount of time – school – Tadoma was not embraced by the staff. I have heard many reasons for that over the years, but they all seem to come down to the fact that most of the school staff did not like having someone else’s fingers and hands on their face. Maybe one of these school years we will find a teacher or therapist who is willing to try Tadoma, but until then, I refuse to give up on using the method at home. Just in the last few months, I have heard ‘words’ that sound very, very much like ‘OMA’ (MaMa), ‘AHMEE’ (Amy – Ashley’s aide) and ‘ILUH’ (I Love You). That makes all the times I have had sticky, mac-and-cheese fingers on my face so worth it!

Update on Equal Animals

Here's another update to the blog entry from below titled "All Animals Are Equal".

I'm very proud of Emily for standing strong on issues that are important to her. Her actions have paved the way for other students interested in journalism.

Don't Love Me Too Much

I often wonder if as parents of children with disabilities we actually do more harm than good sometimes. Do we take care of our children too well? When we demand our schools include our children as much as possible with their non-disabled peers, are we doing as much as we can towards that same goal? Are we doing all we can to prepare our children for a life without us? Sometimes, I am not so sure.

When I see adults with cognitive disabilities, people in their 40’s and 50’s, still learning how to hang up their coats or how to cook, I start to worry about my children with cognitive disabilities. These adults were taken care of by their parents – well meaning, loving, caring people. Were they parents who refused to accept what the future held for their children, or were they just so busy with the day-to-day challenges of raising a child with disabilities that the future never got discussed or planned? What I do know is that every time I see a person in their midlife learning skills they could and should have acquired earlier, I re-examine what I am doing for my children. And although many other parents would see my child-rearing efforts as too strict and regimented, I have to stay strong in my convictions because I know all too well what the future holds.

When they reach the age of 12, every one of my children is responsible for doing their own laundry. That includes my children with disabilities as well as those without. It may take Ashley a little longer to learn the steps involved in laundry, but she will learn it. She may need some cues along the way, but she will learn it. They have to learn how to separate laundry by light and dark. They all have to learn how to hang up or put away those clothes once they are clean and dry. They have to learn how to cook. And learning to cook means learning how to clean up after cooking. They have to learn how to clean the house. For Ashley, especially, leaving toys strewn across the floor could easily cause a fall for her. My children all make their beds – some do a better job than others – but they all seem to like getting into a made bed each evening. They have to learn how to take care of their bathing and grooming. Ashley and Jessica may need some help in the form of grab bars and special cues so they don’t miss any of the steps involved in these personal tasks, but they need to know how to do them. All my children need to learn how to recognize when they need time alone, time to unwind and relax. These are skills that as adults we use frequently. They need to learn how to make phone calls and answer the phone as well as how to leave a message on a phone answering service. They need to learn manners and respectful behavior. And although most kids can figure this out on their own, they may need some help in learning how to have fun. As parents, we can help our children, especially our children with disabilities learn these things, but if we do it all for them, we are doing them a huge injustice. We can provide the necessary adaptations for our children with disabilities, but we cannot take away from them the joy of having completed an important task.

Another area where we perhaps unwittingly set our children with disabilities apart from their peers is the way we outfit them. When Ashley’s 5th grade teacher suggested I send a fanny pack for Ashley to wear on their community trips, I almost lost it. Why not just go ahead and put a sign on her back which points out how different she is than her non-disabled peers? As parents we have to stop opting for the easy way out. We have to know what the clothing styles are for our children’s peers. We have to stop buying them Velcro shoes and elastic waist pants. Dora the Explorer panties may have been cute for your four year old, but your 13 year old will be made fun of in the school restroom for wearing them. And yes, your 13 year old baby girl probably does need to start shaving her legs and underarms.

I will save the discussion of sexual matters and your teenage children with disabilities for another blog entry, but suffice it to say that your children are probably feeling and thinking the same sexual thoughts as their non-disabled peers. My 12 year old daughter with disabilities needs to understand her sexuality just as much as my 16 year old non-disabled son. I want them both to learn to say ‘NO’ until the time is right for them to say ‘YES’.

So, I think for myself, I will just try to raise my children with disabilities the same way I would raise my children without disabilities. I have high expectations for all my children, and I would be quite the hypocrite if I expected the rest of the world to respect those high expectations if I did not. And I will constantly remind myself to not take care of any of my children too well.

Give It A Rest

Being a single parent with four kids means that there is always something to do. Errands to run, laundry to do, food to buy and cook, or orange poster board to locate at 9pm on Wednesday night for the school project that is due Thursday morning. I vaguely remember a time about 17 years ago, BK (before kids), when I could lounge around the house on a Saturday. I could sleep in, eat breakfast at noon, and stay in my pajamas all day if I wanted to. This past weekend, I really wanted another of those lazy days, and decided to try to make it happen.

I told my boys that we weren’t going anywhere all day on Saturday. They gave me strange looks like they couldn’t quite grasp that concept. Ashley and I got up at our normal time – way too early but changing that aspect of Ashley’s life is a Herculean task – and had a leisurely breakfast. Ashley usually goes back to bed for a while after breakfast, and this time, I joined her. I heard the boys clanging dishes and slamming cabinet doors, but I just ignored them. When Ashley and I were good and ready, we got up and moved out to the family room, I sprawled on the couch and Ash began looking at her favorite books. The boys were starting to get restless at this point.

They asked, “Are you serious? We’re really not going anywhere?” I reminded them again that I wanted just a lazy, do nothing day as I handed them money to order pizza for lunch. (Do nothing means no cooking either.) Like drugs for an addict, the pizza kept them happy for a while. Ash and I, meanwhile, were moving back to her bed for a nap.

An hour or so later, Ash and I were back out in the family room for a snack and some TV watching. The boys were pacing at this point. I suggested they clean their rooms, but that idea was met with eye rolling and that ‘hmmmph’ kind of sound teenage boys can do so well. I turned up the TV volume and shooed them out of the room.

A few minutes later, my 14 year old son decided he would take the dog for a walk. Good idea – exercise would help his restless spirit. My 16 year old decided to watch a movie and do some laundry. I started really liking this lazy day idea! The rest of the day was pretty uneventful – exactly what I wanted. I did decide to break down and cook dinner, but it was an easy dinner filled with kid-friendly food. There wasn’t a salad in sight, only smiles on the faces of my junk food loving family.

Soon it was time for Ashley to go to bed. We skipped her bath because that’s what you do on lazy days. She went to sleep watching her favorite video, and I got a leisurely shower before crawling into bed with a good book and a glass of wine. I told the boys “Goodnight” at about 8PM. All in all, a very, very good lazy day!!

A New Perspective

I read a blog entry the other day that gave my comfortable perspective a major jolt. Dave Hingsburger is a writer/public speaker from Canada. His career has been spent on issues revolving around disability. Reading his blog entries always challenges my mind and my long held beliefs, and that is a very good thing. I decided that one of his recent posts needed to be circulated as much as possible, and so I have included it here. I encourage all readers to visit his blog, CHEWING THE FAT, on a regular basis. Doing so will be like an aerobic workout for your brain.

That Word
Empower.

Grrrrr.

There are some words which just piss you off. I hate this word.

"We empower our clients."

First - they don't belong to you - so drop the 'our'.

Second - no one empowers anyone else.

It's a trick word, it allows me to oppress you for years and then when I get tired from holding you down and decide to let you up on your knees I can sound like I'm munificient because I'm releasing the grip a bit.

Empower is only a word an oppressor can use.

Taking courses in counselling and looking at the dynamics of power, one thing was made quite clear to me, my job is not, ever, to empower anyone. I am not God - I can't gift power. My job is to help people discover the power they've had all along, and then help them learn to use it. Power come from taking breath.

We do not give people with disability a voice. They've always had it. Choosing to listen is a choice that the powerful make. But the voice is not our gift, God did that.

We do not give people with disabilities rights. They've always had them. Choosing to respect those rights is a choice that the powerful make. But rights are not our gift, citizenship did that.

We do not give people with disabilities power. They've always had it. Choosing to allow power to be used is a choice that the powerful make. But power is not our gift, life did that.

Why do we always want to see ourselves as liberators, when the liberation needed is from the liberators.

Empower.

Try it on for size yourself. Imagine your boss says, "I empowered you to succeed" or your spouse says, "I'm proud that I empowered you to make dinner". Don't you feel like putting your fist through the computer screen.

Arrrgh.

Empower.

Nails on a chalkboard.

Empower.

Always said with self concious self satisfaction.

Empower.

It's a word about me - not about you.

Empower.

Never enough to challenge us, but enough to require gratitude, a 'thank you'.

Empower.

I really, really, really hate that word.

"All animals are equal, but some animals are more equal than others."

Emily is 15 years old and is in the 10th grade. She skipped 8th grade because of her academic abilities. Her favorite subject in school is journalism, and she would really like to be the editor of her school paper in her junior year of high school. So, you can imagine the excitement she felt when she was accepted into the 2006 Virginia Commonwealth University Urban Journalism Workshop. Here is the text of the letter Emily received from Bonnie D., Associate Professor at VCU:

From: Bonnie D.
Sent: Monday, April 17, 2006 4:39 PM
To: Emily
Subject: Urban Journalism Workshop


Hi Emily,

Congratulations! You have been selected to participate in the Urban Journalism Workshop sponsored by VCU, The Richmond Times-Dispatch and Dow Jones. As you know, the program will run June 18-30.

On May 7, 2006, from 2-4 p.m., workshop participants and their parents will meet with me, June N. and other workshop leaders at The Richmond Times-Dispatch, 333 E. Franklin St. During that time, we will discuss the program in more detail. You also will receive a letter informing you of the date.

Please feel free to contact me should you have any questions regarding the program.

Again, congratulations!

Bonnie D.
Associate Professor
Virginia Commonwealth University


Bonnie D. telephoned and talked with Emily’s mother, Jane, and asked if Emily had received the email. Jane assured Bonnie D. that Emily had received the email, and that she was very excited about the opportunity. Also during the phone call, Bonnie D. reiterated to Emily’s mom that Emily would soon be receiving a letter about the workshop. Emily’s excitement continued to grow.

But, all Emily’s hopes and dreams came crashing down when she received a phone call from Bonnie D. On April 26th, Emily received a phone message asking her to call Bonnie D. When Emily returned the call, Bonnie D. asked her what race she was. When Emily said Caucasian, Bonnie D. said that she could not be a participant in the workshop, which was only for minorities. When Emily’s mother saw how distressed Emily was after the call, she called Bonnie D., who told her the same thing. Jane, Emily’s mom, told Bonnie D. that Emily was a person with a physical disability, and that because of that disability, Emily had always been considered a minority. Additionally, Jane pointed out that the VCU website did not specify “racial’ minority, but only used the word “minority”. Bonnie D. replied that it didn’t matter; Emily had to belong to a racial minority group. Jane pointed out that it would have been far better to be clear about that before Emily applied and most certainly before Emily was informed of her acceptance. Bonnie D. said this was an unfortunate misunderstanding. Bonnie D. also said the requirements come from the sponsor, Dow Jones, and they were not negotiable.

In the words of Jane, Emily is one of those kids born saying “That’s not fair”, both about her own circumstances and those of others. Her journalism class was one tough class to endure from the start. She was made fun of and picked on for a variety of reasons. However, she has persevered and is now a fully participating and accepted member. She has a quirky sense of humor and with her FSH-induced lopsided smile, she has managed to make herself well liked by her peers and her teacher. Emily has always noticed and pointed out injustices in her classrooms, schools, and in the news. She realizes that some injustices are unintended, some flukes of fate, and some deliberate and mean-spirited. Emily puts her ouster from the Urban Journalism Workshop in that last category.

Emily was devastated by this turn of events. She was looking forward to spending two weeks at VCU doing her favorite thing in the whole world and learning to do it better. This workshop would have given her the boost she needed to land an editor job on the school paper in the fall. If she could make editor in her junior year, she would be a strong candidate for a senior editor position her senior year in high school, and that would make her college and scholarship applications much stronger. With one phone call, those dreams have been dashed.

Emily's other activities include Girl Scouts (since 5th grade) and a swim team she has been swimming for since 1st grade. She can only swim breast stroke now because of her disability, and can only go slowly, but she swims as hard as she can. As she does everything in her life.

This is indeed a loss for Emily. But, she will cope and move forward – she has had lots of practice at having to do that. The bigger loss, in my opinion, is that the journalism world may have lost one of its rising stars all because of what Bonnie D. calls an “unfortunate misunderstanding”.

**UPDATE**
After securing the assistance of an attorney through the Center for Individual Rights in Washington, D.C., Emily has settled a lawsuit with the parties involved in the workshop. Emily will attend the 2007 Urban Journalism Workshop.

It Takes a Village...of Diversity

Ashley no longer attends a daycare facility after school. She has 'aged out' of their services. But that's ok by me. Finding an appropriate daycare was always so challenging. I've tried a couple for her but none were a perfect fit. However, for a short period of time, one of her daycare facilities did have a lot to offer. Management changes and staff turnover caused that to change over time, but I will always be grateful for one special aspect of that facility - it's commitment to diversity. I wrote the following piece for a local publication about four years ago. I would still like to think that a similar daycare facility could be found...

African music plays softly in the background. Children of many ages are playing together – older ones helping with the younger ones, and not one lacking a little nurture should a perceived trauma occur. Signs in Spanish and Braille are sprinkled throughout the room, and adults converse with children in several languages, including sign language. Dolls of color, books featuring children with slanted eyes or wheelchairs or canes, and dress-up attire representing a rainbow of cultures are strewn throughout the room. Where is this culturally-rich scene – an idealistic commune from the 1970’s, a movie portending a globalization in the future? No, it is my daughter’s daycare facility, and it is located right here in Richmond.

I have four children, all of different abilities and personalities, and they have attended several different childcare facilities around Richmond. Like most parents, I found that the search for appropriate childcare can be a bumpy road. While not wanting to cause undue trauma to our children by moving them from facility to facility, we often leave them in a childcare facility that lacks the important things for which we search. I’ve been through a bright and shiny new facility that on the surface appeared appropriate, but in the final analysis, staff turnover was high because of substandard wages. I’ve been to the affluent facility that caters to children of parents with high standards and full pockets. The field trips at that facility were great, but all the children were cookie-cutter images of each other. I’ve tried the nanny-in-the-home option, but decided daily supervision was too difficult. Through all these searches, my children have grown, sometimes in some not-so-positive ways. But now, with my youngest daughter still facing many years of childcare, I have found that for which I was looking.

My youngest daughter has special needs. She looks and acts a little differently than a lot of children. But, in the most important ways, she is just like any other 8 year old. She wants to be accepted and have friends. She wants the security of having an adult nearby whom she knows is watching protectively over her. She wants to have fun, take fun field trips and play with toys that are not her own. Because she is deafblind, my daughter loves exploring the differences in people. Long, straight fine hair holds as much pleasure to the touch as does stiffer, tightly curled hair. Although she often accidentally bumps into the youngest walkers in the daycare classroom, she will ask their forgiveness with a gentle hug and a kiss on the top of their head. Her fascination with the clips and ribbons that bedeck the heads of her female classmates equals her fascination with the watches, necklaces and brightly colored clothes of her male classmates. To my daughter, each and every person at her daycare facility is unique and worthy. The color of their skin, the cost of their clothes, the texture of their hair, and the inflections of their voice do not matter to her. And, that is exactly the way I want it. I want her to value people for the beauty that can be found uniquely within. I want her to relish the pleasure of getting to know people regardless of their ethnicity or socioeconomic status. And, she is doing just that in her current daycare facility.

This facility is a melting pot of cultures. Both the staff and children represent many cultures, economic levels, abilities, and races. I feel like I am entering the United Nations every time I walk through the door. It is exactly what I want for all my children. Has my daughter’s deafblindness led me to this gem? I truly believe it has – her lack of sight and sound has opened my eyes, ears…and my world…to the beauty of diversity!

Ashley's Knight WILL Slay Your Evil Dragon

You’re dirty and your whole organization is dirty. You know it and you work very hard to keep this ‘under the covers’. You say you’re here to help. You say you want to provide what is needed. You do an excellent job of writing all the right words and using politically correct pictures. You have even convinced a lot of the people in your organization that you have a good heart. But the truth is your heart is spoiled and rancid. A person who has earned my complete trust and respect says he would like to cut open the soft underbelly of your organization and reveal everything that is rotten, putrescent and fetid. If I have anything to do with it, he is going to get that chance.

While it would be easier at this point for me to go away and find other solutions, I refuse to give up. It’s time for many more people to see what you are really like. It’s time to burst that bubble of superiority you possess. It’s time for you to start doing what is right and ethical. It’s time for Ashley’s knight to slay your evil dragon.

Plug in the Saw, Lucille

Ashley was cast today. Not for a play or a movie, but for those plastic orthotic things you see on the feet and ankles of many kids with physical disabilities. This was the third attempt at casting and finally, success was achieved.

The casting process is almost exactly like getting a cast when an arm or leg is broken. There is a stockinette, something like a sock with the toes cut out, that fits over the foot and leg, a pan of water, something that looks like rolled up gauze but is actually rolled up fiberglass, some scissors, and a saw. The person doing the casting has to get the stockinette on the foot of the child, put a long blue piece of plastic down into the stockinette and next to the foot and leg, wet the fiberglass gauze stuff, wrap it snugly around the child’s foot and leg, and then hold it still and in the same position until it dries. Wiggling the toes, lifting the foot, or trying to turn the ankle can sabotage the process and take things back to square one. Once the cast is dry, it must be cut off with a little saw. The saw blade is run down the blue piece of plastic previously placed next to the child’s skin, and if all goes well, off pops a fiberglass replica of the child’s foot and leg. The entire process must then be repeated for the other leg and foot.

Sounds fairly simple, eh? Well, let’s throw into this picture a child with deafblindness. Ashley gets anxious in unfamiliar settings and around unfamiliar people. She doesn’t like to wait more than a few minutes. Strange smells and sounds set her on edge. And she especially doesn’t like when someone grabs a part of her body and starts doing things she wasn’t told were going to happen. Time of day, how well-rested she is, how she feels, and whether or not she is hungry can all play a role in how well Ashley handles an unfamiliar situation. So, on the first two unsuccessful attempts at casting, the fact that the owner of the company made Ashley wait an hour after her appointment time started things down a slippery slope. Add to that all the unfamiliar smells and textures, the fact that the owner never spoke a word but just kept grabbing at her foot, and lots more waiting, and the gig was up. The meltdown happened but the casting didn’t. Finally, the Wicked Witch of the West End, affectionately know as Mom to Ashley, had to step in and insist on some changes.

Ashley’s therapist and a new caster, a person with better bedside manner and distinctly better time management skills than the owner of the company, agreed to attempt the third casting at Children’s Hospital, the place where Ashley goes every week for therapy. Now that she was back on familiar ground and the people around her were not strangers, Ashley was more relaxed. It was early morning and she was well rested and well fed. She had some of her own toys with her, and she was being told through sign language exactly what was going to be done at every step of the process. The cast for the first leg was applied, dried and cut off with nary a whimper from Ash. The casting of the second leg went just as well.

Doctors, therapists, nurses, and all other professionals usually know their craft extremely well. But, they don’t always know their patients equally as well, especially if the patient has rare, unusual, or low-incidence disabilities. The professionals that I consider the best are the ones who are not afraid to admit that they might need some help on that patient piece. No one knows my child better than I do, and if a professional is willing to admit that and to accept helpful suggestions, everyone’s life would be so much easier, especially Ashley’s.

The Sins of the Mother

About 14 months ago, Ashley got another brother. Corey, now 14 years old, joined our family on Christmas Eve, 2005. His grandparents brought him and his few belongings from Florida to our home in Virginia, and then within the hour, left him to my parenting.

Corey’s birthmother made her home on the streets of Baltimore, and drugs, alcohol, and ‘johns’ were her constant companions. Corey witnessed things no child should see, and he never knew the security that comes from a loving home and family. His education was spotty at best, and his chances to form friendships with his peers were non-existent. When he was 8 years old, his grandparents came from Florida to rescue him from that lifestyle.

Corey’s birthmother is the adopted daughter of the grandparents. The grandparents were also the parents of two biological children – a grown daughter who lives just 5 miles from our house, and a son who was killed in an automobile accident many years ago. While the grandparents’ connection to their daughter in Virginia (and her children) has remained strong, the connection to the adopted daughter in Maryland is one enveloped in disdain and contempt. And so it seems, the connection to Corey.

When I was first approached by the biological daughter living in Virginia about the possibility of Corey joining my family, the praise for my child-rearing efforts with ‘difficult’ children flowed freely. That daughter shared that her family situation was such that she could not bring Corey into it. She never shared the specifics of that situation, but since she was a well-respected professional in the healthcare field, I assumed her decision had been well thought out, and perhaps even agonized over. Surely, I thought, it was not an easy thing to send your flesh and blood outside the family to live with someone else. But then I figured it out – Corey is not their flesh and blood – and sending him away was not a difficult decision.

Corey is a troubled child. Who wouldn’t be given how he spent his first 8 years of life. One could assume that once he was ‘rescued’ by his grandparents, he might begin to feel a little more security, and his troubles could be eased with the proper interventions. That does not appear to be the case. He just traded one bad situation for another.

Every child deserves to feel wanted and loved. They need celebrations and discipline. They need memories and a feeling of connectedness. I believe Corey missed all those things, but I truly hope they are now becoming a foundation for his life.

I had hoped that when Corey joined my family, he would be able to maintain regular contact with his birth mother’s family. But that is not happening. That family has moved on to a happier, less stressful place where prostitutes, drug addicts and the children they bear never travel. Corey adores his little cousins and they adore him. He could have been very jealous of the trappings of wealth enjoyed by his grandparents, aunt, uncle and cousins, but he wasn’t. He just wanted to be loved. The anger he contains inside but which occasionally surfaces is not born from jealousy or greed but from the unfulfilled need each human being experiences.

My goal is to show Corey that family is important. That family members respect and care for each other, and that there is security to be found in that bond. I want him to grow into a man that loves his wife and children and who would do exactly for them as I will do for him – love him without conditions or boundries.

A Letter to Ashley

My dearest Ashley,

Someone asked me yesterday if I could snap my fingers and cure you of your deafblindness, would I do it. This person went further to ask if in an ideal world I could keep any other child from having deafblindness, would I? These were not easy questions, and I had to ask the person to give me some time to think about my answers. I tossed around concepts in my head like “making you better”, “improving your health”, making decisions for you which would mean society would be more “accepting” of you. The lines between decisions to improve your health and well-being as opposed to “making you better” began to blur. Of course I will always do whatever I can to keep you healthy and well, but I just couldn’t think of a way to “make you better”. In my eyes, you are the best you can be – perfect in every way. And, I honestly don’t give a damn about what society thinks – but I had to ask myself, do you? I wondered if you felt you might be “better” if you could see with perfect vision and hear all the special sounds you miss now. Would you feel your life was more enjoyable, less difficult, without your disabilities?

After a long, sleepless night with these questions playing chess in my mind, I believe that for now, I would not cure your deafblindness. I watch you enjoy every moment of every day. I see the joy on your face when you smell a flower and feel its petals. I watch the wheels turning in your brain as you study the pictures in your children’s dictionary, your face less than an inch from the page. The pleasure you experience lying next to Miss Amy, your hands touching her face and lips, trying so hard to feel how to say a new word relaxes your entire body. Bubbles and snow globes hold a mystery that never grows old for you. Sitting on the sand at the beach, inches from the surf, your eyes closed to take in every sensation, is a masterful portrait of peace. You are a happy person living life your unique way. I don’t believe you feel your life is any more or less difficult than that of the average person. Everyone faces challenges throughout their life, just different types of challenges. The difference for you is that you have taken your challenges and turned them into sensory works of art.

So, if I could snap my fingers and restore your full sight and hearing, would I? Yes, but only if you asked me to. Would I hope that in an ideal world no other child would have to endure the difficult times you have endured? Yes. Would I like for all children to have the opportunity for an appropriate education, friendships, belonging to a community and a family? Yes. Would I like to wipe away any pain you have had to endure and will yet have to endure? Yes.

But always know, my darling daughter, to me you are perfect in every way. You are a gift – a special person with vision and hearing impairments who has sharpened both my vision and hearing. I don’t think you realize the impact you have had on me and the others in your world. We are better people, and the world is a better place because of the way you are.

I love you,
Mom