The Next Phase

The struggles to ensure a future for our children with disabilities never ends, does it? First we have the school battles, fighting for the things we know our children will need to succeed in the future. Be it a special reading program, instruction in how to travel with a cane, or extra school time – it often seems that we have to fight for everything.

Then there are the medical issues we face. The search for a diagnosis and proper treatment. Sometime we get lucky and find doctors who share our commitment to children with disabilities, but more often than not, we endure long waits, doctors who don’t ‘get it’, and other medical staff who act like we and our children are a nuisance.

And I would be remiss if I left out the struggles for community acceptance, finding a church home, and all things surrounding physical accessibility.

I am now, however, moving into a new realm of struggles – the fight to ensure my Jessica can find a job that she likes and which she feels is something she wants to do with her life.

I had sincerely hoped that the school system would do an adequate job of preparing Jessica for employment. IDEIA says they have to. Well, I don’t know about you, but that hasn’t happened yet. The school has worked on things like cooking, doing laundry, and hanging up clothing. But what about filling out a job application, showing up for work on time, getting along with co-workers, and specific skills that Jessica would need to find a job?

I knew I couldn’t count on the school system to completely prepare Jessica, but I had an ace in my pocket, or so I thought. Our state has an agency called the Department for Rehabilitative Services. Their published mission is to help people with disabilities find employment.

Since our last two meetings with that agency involved me taking an attorney with us to the meeting, you can imagine how well that is going.

I won’t go into too many details yet, but this agency that is supposed to help Jessica seems to grossly underestimate her abilities, and in fact, will only speak to me when Jess is in the room.

I’m going to keep trying. I’m calling for an IEP meeting and inviting the DRS staff. My hope is that the two organizations will work together for the common goal of preparing Jessica for employment.

Shall we start taking bets now on how well that will go?

Suggestions

Yesterday was the last day of ESY (extended school year) services for Ashley. For the last seven weeks, she has gone to school Monday through Thursday from 8am until noon, all in an attempt to keep her skills from regressing. The actual classroom services were largely a waste of time, but that is not what this blog post is about. This post is about school bus services.

Yes, I know, I have written many times in the past about the issues surrounding bus transportation in my school district. Well this post is not going to dwell totally on the negative. Bus services were, for the most part, excellent this summer. They did however start to fall apart this last week of school. And, I have a few suggestions so that doesn’t happen in the future.

The important and very positive thing about bus services this summer was that Ashley had the same bus, the same bus driver, and the same bus aide for six out of the seven weeks. That meant she could build a relationship with them, and she knew what to expect each day. She saw the same children on the bus each day, and the arrival and return times were very consistent. The driver and the aide took the time to talk to me and to get to know Ashley, and most mornings, that meant she skipped happily off to board the bus.

During this last week of school, the regular driver and aide were scheduled to attend training. That meant new staff – people who knew nothing about Ashley, people who were changing things up. And, as most parents of children with disabilities know, changing things up can be a minefield – and it was for Ashley.

So, rather than going on and on with my complaints, today I have decided to offer some suggestions!

First, I acknowledge that my school district really does want to provide acceptable transportation services. I also acknowledge that bus staff have lives too and must sometimes be out sick, out for training and other such stuff. What I would like my school district to acknowledge is that changes, even minor ones, can be very disruptive for many students with disabilities.

For example, some students like to sit in exactly the same bus seat each day. Making that student sit in a different seat could set a day of distress into motion.

Some students like to sit alone and some like to sit with a friend, often a particular friend. Deny either that accommodation, and you may get cursed, hit, bitten, etc.

Some students like music on the bus – some don’t, but all usually want things to stay the same – music or not. Play music when it hasn’t been played before, or all of a sudden stop playing the music – or God forbid, change the station, and you could have several meltdowns.

Each student on the bus has special needs, and some of those needs involve seizures or other such medical conditions. New bus staff needs to know that, or a seizure may be viewed as negative behavior. Some students may be deaf, and if the bus staff keeps talking to them and gets no response, patience will be tested. Some students may have a comfort item that goes everywhere with them. If there is no safety reason for denying that comfort item on the bus, the staff needs to know not to touch it.

These are just a few examples, things which I think could be resolved purely with communication. How hard would it be to have a diagram of the bus seats posted on each bus? Use an erasable marker to show which seat each student prefers to sit in.

Have a one page/one paragraph summary of each student’s likes and dislikes. I’m sure most parents would be happy to provide this. Keep that information in the bus, and require substitutes to read it before leaving the bus garage.

Just a few short minutes in the morning and afternoon for a substitute driver or aide to review information could make for happier students, happier parents, and an easier job for bus staff and teachers.

Do you have any other suggestions for improving school transportation and keeping everyone informed?

Love My Smile

When my family is out in the community, I know we can be quite the spectacle sometimes. The two in wheelchairs often race through the store aisles - Chip plays 'reckless driving' with Ashley while she giggles loudly - Ronnie burps loudly and we all pause for just a second and then burst out laughing - we put funny hats or clothes on one another - in short, we have a blast while getting our errands accomplished.

During an outing this past Saturday, we were heading to Target. Just as we pulled into the parking lot and began unloading all our paraphenalia, a van and a car loaded with adult group home residents and their 'staff' also pulled in. The residents were happy and excited, some skipping, some laughing, some chatting loudly about what they wanted to buy. The staff, however, did not appear the least bit happy.

The staff began shouting orders to the residents, "quiet down!", "get over here", "go in the bathroom right now", and "get away from the water fountain." It didn't take long for the smiles and eye twinkles to disappear from the residents. They fell into line and continued to follow whatever orders they were given.

This observation is typical of what has always bothered my about groups homes and the staff hired to support the residents. It's a job to the staff, and a job that many don't seem to like or enjoy. And their lack of enjoyment with their jobs has a direct effect on the folks they are hired to support.

It saddens me that people have their joy tamped down. Joy is often difficult for group home residents, or others with disabilities, to find. Let's do everything we can to support people when they are happy and joyful...even if it's a job.

Just Stop It

We spent a lot of time out in the community during our four day holiday. The weather was beautiful, and we were all in the mood for Summer. During one of our outings, we visited our local produce market. It's a little bigger than a farmer's market, but nowhere near the size of a grocery store, and the fruits and vegetables are always the freshest in town.

While we were there picking up our blueberries, strawberries, oranges, apples, limes and corn, we really irritated a lot of people. Like I mentioned in an earlier post, we seem to annoy a lot of people because we are slow at times.

I understand that we move through places like a choo-choo train, two wheelchairs lined up, and everyone else in a single file also. I do that purposely so we don't block any aisles. But people still get annoyed, and the thing that I don't understand is why I feel the need to say I'm sorry to those impatient people.

Whenever I see "the look", I say "I'm sorry", and try even harder to minimize the space we all occupy. Why do I do that??? Why do I apologize just for existing, but that's what I feel like I am doing. If I hadn't already gone out of my way to be as considerate as possible, the "I'm sorry" might be an appropriate response, but I do go out of my way, even to the point of trying to pick times that fewer people are in the placed we need to go.

So, while we annoy people frequently, I am now annoying myself more. Neither I nor my children have anything to apologize for, and I need to remember that.

Sometimes I Do, Sometimes I Don't

Do people sometimes criticize you for doing too much for your child with a disability? Do they say, “Let them do that? How else will they learn?”
I have, in fact, said similar things to other parents of children with disabilities. I even wrote a blog post titled Don’t Love Me Too Much on this subject.

I believe we need to let our children try and sometimes even fail so that they can learn. But often when I am ‘doing’ for my child, it’s more for me than her.

Yes, my daughter is capable of dressing and undressing herself. Yes, she is capable of washing her hair and completing her bath alone. Yes, she can get up and get something if she wants it. And yes, she needs to be pushed sometimes to learn how to do things for herself. But often the times I spend ‘doing’ for her are some of the sweetest times we share.

I love helping her dry off after her shower. I love helping her get dressed in her warm pajamas, and I love the feel of her skin against mine when I am putting lotion on her arms and legs. I love the softness of her hair as I blow it dry, and I love tucking her into bed just as much now that she is 14 years old as I did when she was 2 years old.

I realized a long time ago that I am a ‘helper’. I take great pleasure in helping people – my children, my neighbors, and my friends. It’s just how I’m wired to live. And with maturity has come the knowledge that sometimes it is good to step back and not ‘do’ for others, and sometimes it’s perfectly fine to ‘do’.

The moments of my life with my children are fleeting. I refuse to waste a single one of them just because someone else doesn’t agree with my approach to helping my child grow. Growth is not measured only in the number of skills one has, but also in how much they love and connect with others.

How Not To Run A Group Home

This past Saturday, I made a trip to Jessica's group home to take her some new school clothes and school supplies. What I found when I arrived was more than appalling. I thought the best way to share my observations would be to let you read the letter I have written to group home managment and copied to our state's licensing organization. When I get responses, I will share those also.

(The picture is not of Jessica's bathroom, but the problem was very similar)

August 31, 2009


Ms. Group Home Manager
Group Home Company


Dear Ms. Group Home Manager:

As I mentioned to you on the phone this morning, I visited your children’s group home on Saturday, August 29, 2009, and was quite disturbed about the condition in which I found my daughter’s bedroom and bathroom. In addition, I noted several other things in the general living area of the home that I believe need to be addressed. I have listed my concerns below:

• When I arrived at approximately 10:00 am, my daughter, Jessica, was sitting on her bed clothed in shorts and a tee-shirt. I noticed that there was vomit in her bed, and that she smelled both of vomit and general body odor. I asked her if she had vomited in her bed, and she said she had, when she had been sleeping. I also asked her if she had taken a shower either the previous night or that morning, and she said she had not. I asked her to remove the sheets from her bed, and I went to inform one of the two staff members present that Jessica had vomited in her bed. At that point, the staff member who had been cooking breakfast came to Jessica’s room and took the soiled sheets away. The other staff member remained sitting on the couch in the living room.


• When the bedding was removed from Jessica’s bed, I noticed that the plastic mattress cover was in shreds, obviously providing no protection for the mattress. Since Jessica is often incontinent, I believe more attention should be paid to having the appropriate plastic cover on her mattress. Due to the type of plastic covering on the mattress, Jessica was unable to remove it. The staff member did not remove it when she took the bedding away.


• Jessica’s room is carpeted but there is also a small area rug on top of the carpet. That area rug was not lying flat on the floor, and Jessica tripped over it twice while I was there. Also, the mat in her bathtub and the mat on her bathroom floor were similarly bunched up, and appeared to be a danger to Jessica considering she does drag her left foot.


• Also in her bathroom, I noticed that the bathtub hand rail used to assist Jessica in getting into and out of the bathtub, was covered in mold. Sitting on that rail, and touching the mold, was Jessica’s toothbrush.


• I began to clean out and sort the clothes in Jessica’s closet. While doing so, I noticed many gift bags such as one would receive at holiday celebrations (Valentine’s Day, Easter, Christmas) filled with candy. Obviously the candy had been there for quite a long time. I also found similar bags of candy on her dresser. I am concerned that the presence of candy for such a long time would draw either insects or rodents.


• Jessica’s entire room, in my opinion, had not been thoroughly cleaned in a very long time. Inside the lamp in her room, was a thick layer of dead bugs and dust. The tops of her dresser and other furniture in her room was covered in dust and sticky substances, her carpet was very stained and appeared to not have been vacuumed in a long time, and her windowsills were thick with dust and dirt.


• On that morning, the temperature was approximately 85 degrees at 11am. The air conditioner in the home was not on. Rather, Jessica’s windows were open as were several other windows in the house.


• Sitting in Jessica’s open windowsills were a can of Lysol and a can of Pledge.


• As I was leaving the group home, I also noticed that the medication closet was unlocked.

As you and I discussed, it would be ideal if Jessica was able to completely care for her room, clothes and bedding. I fully support and expect that she will play a role in those tasks, and believe they are part of her plan of care. However, given her level of intellectual disability, the fact that she only has use of one hand, and her emotional instability at times, I believe it is unrealistic to think that Jessica is capable of maintaining those things alone. Also, given the fact that the group home company decided to move the children’s group home from the West End of my city, a location that was just 5 minutes away from where I live, to the far East End, a 40 minute drive away from my home, and understanding that I also have another child that is medically fragile, it is not realistic to expect me to be at the group home often enough to maintain a level of cleanliness in Jessica’s room and bathroom. In fact, given the amount of money that the group home company receives for Jessica’s care both from Medicaid and from me, I would expect a higher level of attention to cleanliness and care for Jessica.

I am more than happy to discuss this further with you. I believe at a minimum a professional cleaning staff should be contracted to thoroughly clean Jessica’s bedroom and bathroom, including carpet cleaning and window cleaning. I also believe Jessica’s rooms should be painted, and then a plan put in place to ensure that an acceptable level of cleanliness is maintained.

Please feel free to contact me at the address/phone number listed below.



Jessica's Mom
My Address
xxx-xxx-xxx(home)
xxx-xxx-xxx(office)

cc: Department of Behavioral Health and Disability Services,
Office of Licensing
Attention: Person in Charge

Push Me Pull You

How do you decide what skills to push your child to master and which skills can take a back seat?

When I first adopted Ashley, she was 2 years old and I was new to the world of special needs parenting. I felt I had to push on everything. Ashley at 2 years old had never had early intervention services, never had physical or occupational therapy, never had a parent who encouraged her to reach beyond herself. So, my initial approach was to flood her with experiences.

We had speech therapy twice a week, occupational/feeding therapy five days a week, and vision services three times a week. All that was in addition to what I worked on with her at home, and believe me, I tried to make everything into a learning experience. Then one day, my son, Chip, then seven years old, told me while I was practicing ABC’s with Ashley’s Spaghettio’s during feeding therapy that not EVERYTHING had to be a learning experience. That son of mine has always been wise beyond his years…

As Ashley grew, I have backed off a little – at first, very very little, but still I always kept what Chip had said in the back of my mind. I learned to relax more. I learned that Ashley could work on skills just by having fun. I learned that sometimes she just needs to do nothing. And I think the result is that Ashley is much more well-rounded than some of her equally severely disabled peers.

Believe me, I still work very hard to help her with skill development. She still has a lot to catch up on, and probably always will. But we also have fun – we do things just for the sake of doing them, not because she will have the opportunity to learn. I’m letting her school district, her teachers and aides take more of the responsibility for her education, while I make my major responsibility parenting.

Ashley is a lovely and unique child, and I have made the decision to celebrate that uniqueness. The last thing I want to do is make her feel that she always has to do better and do more. She is doing the absolute best job of just being herself, and I couldn’t ask for anything more.

Doctor Etiquette

Ashley and I have been in a lot of doctor's offices recently. I try to schedule as many of our appointments as possible during school breaks, and it seems I am doing a good job with this Winter Break! Between the two of us, we have visited or will visit the hospital MRI department, the rheumatologist, the neurosurgeon, the pediatrician, the gynecologist, and the gastroenterologist.

Some of our visits will be a lot better than the others, but not because of the particular malady that brings us to the office. Rather, the success of the visit will be determined by the doctor and his manners.

I haven't heard many folks talk about the importance of good manners in a doctor. So, I was thrilled to find the following article earlier this month in the NY Times. After reading it, let me know what you think. Is it important to you that your doctor practice good manners, or is his/her skill alone what helps you decide whether a doctor is "good"?

The Six Habits of Highly Respectful Physicians

How Is Your Box Labeled?

I know teachers have tough jobs. I know they are often overworked, and that it is difficult to give each child individual attention. But like it or not, in the world of special education, individual attention is dictated by the IEP. And to me, that individual attention means thinking outside the box when you have a student receiving special education services, especially a child with complex disabilities.

For example, just because a child has decent expressive communication skills, it doesn’t mean that child’s receptive skills are equally as good. My oldest daughter is a perfect example of that. She has learned what her doctors term ‘cocktail party conversation’. She can appear to carry on a conversation with anyone – because she has learned to imitate the cadence and flow of conversation between people in a group. She does not, however, have much of a clue what the conversation is about or what her responses really mean. She gives the impression of understanding, but if quizzed, obviously does not understand. I believe a good teacher would notice that immediately. However, most of her teachers have not.

I had a conversation with another parent this weekend on that same subject. Her son is hearing impaired and has a cochlear implant. His expressive communication is adequate but his receptive is sorely lacking. So what did his most recent school hearing evaluation say? Not much, because he was labeled as ‘bad’, not concentrating on the task at hand. I believe a good teacher would have realized that receptive communication might be the issue.

Ashley is another student that often baffles her teachers. Because Ashley sometimes gives the impression of hearing spoken language, teachers believe they can always speak and she will understand. However, if she is quizzed on what was spoken, nine times out of ten, she did not hear correctly. For example – she confuses words that same similar – pig and big – key and me – you and blue. Her hearing impairment is so significant that she cannot rely on speech, and her teachers need to realize that. Most of the time they don’t.

In the second grade, Ashley’s teacher said she was a visual and auditory learner. Ashley is deafblind. In this current school year, 8th grade, the teacher made the statement that she can communicate just fine verbally with Ashley. Maybe the teacher can speak just fine to Ashley, but Ashley is not hearing her.

This box that surrounds our children with disabilities is more often than not the reason for discord between parents and the school system. If we could all think outside the box – if teachers could take the time to understand the whole child – if administrators could give teachers the support and time they need – I really believe there would be fewer problems.

But if our school districts continue to place our children in boxes, disputes will continue, and our children will be the ultimate losers.

Can't We Do Better?

I attended a meeting this week at the day support facility for my oldest daughter, Jessica. Jessica is going to be 18 years old in just a couple of weeks, and after school and on school holidays she attends a program at one of our local facilities that specializes in day support for people with cognitive disabilities.

Jessica has been at this particular facility for six years, and prior to that, she spent 2 years at a similar program run by another disability-focused entity. If you do the math, you will see that she started in these programs when she was 10 years old, an age where most children of the same age are attending daycare facilities after school and during school holidays. However, because of Jessica’s aggressive tendencies, no traditional daycare facility would agree to accommodate her.

I’ve never cared for the day support programs, but as a working single parent, my options were limited. The first program Jessica attended was staffed by low-paid workers, most of whom had little to no experience in relating to people with cognitive disabilities. The facility itself was gloomy and dark, and the ‘clients’ (the name for the children who attended the program) would sit around doing little for most of the day. Homework help was nonexistent, and even though plans of care were developed for each child, they usually were not followed. The atmosphere was so depressing that I hated sending Jessica there each day. A depressing environment was definitely not what she needed.

After the first facility, Jessica moved to the only other program in our area, the one that she is currently attending. While the staff at the second program is slightly better trained, the feeling I get when walking in to the facility is not positive. The rooms are small and crowded, and the furnishings are old. The look is not what one would find in a mainstream daycare facility, but rather gives the impression that the people in charge think appearance will not matter to their ‘clients’.

Since all the ‘clients’ have significant cognitive issues, and many have significant behavior issues, I have to wonder how Jessica, and all the other children for that matter, will have positive behaviors and habits modeled. While observing during my meeting, I saw older teenaged clients being handed crayons for coloring. I saw those same clients throwing the crayons across the room. I saw Jessica trying to flirt with a boy about her same age, but her flirting led to inappropriate touching and language. The staff person merely pulled Jessica away from the boy. I saw a young man with Autism rocking back and forth and moaning. The staff person sat right next to him and did nothing. Then a young girl, probably about 13 or 14 years old, came running through the room, naked and touching herself. Many of the other clients laughed, and even one staff person laughed with them.

I have been searching for years for a program that will be a good match for Jessica, both now and in the future. So far, I have found nothing in my city. I realize that caring for and supporting children with significant challenges is not easy, but there has to be something better. Our service delivery systems are doing a rotten job, and I don’t know what to do to change it. Just today in the news, my state’s legislature announced it was going to look to cut social service programs to balance the budget. If that happens, the bad is going to get even worse, and our children and adults with cognitive disabilities will continue to have bleak futures.

Do Not Disturb

Today’s post is dedicated to Lynnette. She knows why…

I really had no idea how my life was going to be turned upside down when I adopted a child with significant disabilities. I thought I did, but I was wrong.

When I first brought Ashley home, my only parenting experience had come from raising my birth son as a single parent for 5 years. And, he was a pretty easy child to raise. He had some medical issues, but absolutely nothing to compare to Ashley’s medical issues. And, he was typically developing, if not advanced. My interactions with school were typical – my interactions with medical folks were typical – my battles with insurance were few – and my life was my own. All that changed the day I brought Ashley home.

As parents of a child with significant disabilities, our lives become very open books. Doctors and nurses ask very personal questions, and they ask them over and over again. School systems demand answers and test results and access to medical records. Even our friends, at least those brazen enough, ask very personal questions about our children and about our feelings and belief systems. We usually expect those things to some degree. What isn’t usually expected, or known in the beginning, is how we will lose all semblance of privacy in our own homes.

Almost all of us of who have children with significant issues will have to have in-home help at some point. That help may come in the form of nurses and/or personal care aides, and along with those people come the managers – the service facilitators who must visit periodically to ‘check up’ on things. And since all those service providers are seldom paid what they are worth, there is a lot of turnover. And that turnover means there is a constant stream of strangers into our homes.

These strangers hear our phone answering machine messages; they know when we leave dirty dishes in the sink; they hear us yell at our other children; they put away medical supplies and in the process, see that our closets and drawers are not always neat; while working in our kitchens, they see the beer in the refrigerator or the vodka in the cabinet; they know if we haven’t folded the laundry in the dryer, and in an effort to help, they fold not just our child’s clothes, but our clothes also. Just for the record, I don’t want other people folding my underwear.

They know what kind of books and magazines we read. They know the types of movies we rent. They know our tastes in food, and may even inadvertently uncover the hidden stash of candy. They may accept packages delivered for us, and in an attempt to be helpful, may open them and view the contents. They may bring our mail into the house, seeing just how many and what types of bills we receive.

In short, they are privy to almost every single aspect of our lives – not just the life of our child they are hired to assist. And I wonder, does it have to be this way? Do we have to give up our privacy just for our children to receive the services they need? Am I out in left field here, or do others have similar concerns? I would love to hear your thoughts.

Trying To Find A Balance

One of the things I have always struggled with as a parent is how much of a right to privacy my children should have? Now that I have 4 teenagers, that question is on my mind constantly. So I'd like to know what you think? How have you dealt with the following issues:

Do you think your teenager has a right to privacy?

Are there some things you believe that teenager should be able to keep private and some things that you as their parent should have a right to see?

Do you check their email – reading what they send and receive?

Do you check their list of visited sites on the Internet?

Do you have any parental control software on their computers?

Are your children allowed to use their computers alone in their rooms?

Do you feel as a parent you have a right to go through anything in your child’s room, school locker, school notebooks, etc?

Are your children allowed to use the phone in a private place in your house?

Does your child have a cell phone with no use restrictions?

Do you review a detailed bill of their cell phone usage?

Do you know all your child’s friends, or are they allowed to go to houses of people you have never met?

Have you met the parents of your child’s friends?

If your child drives, do you check the car’s odometer?

Does your child have a curfew, and consequences for missing that curfew?

Do you feel your are more strict or less strict as a parent than your parents were with you?

What is your biggest fear as it relates to you children?

The Best Care

In just a few weeks, our statewide family support group, of which I am the president, will be holding its annual family retreat. This year we will be at the beach, and that always brings about double the attendees as usual. Our support group, which is funded completely by grants, is able to pay the full cost of the retreat, including hotel rooms and all meals for the families. In addition, we provide childcare services for the families while the parents are attending educational seminars.

The children for whom we provide childcare have significant disabilities. In addition to having deafblindness, most have other physical or intellectual disabilities. This year we have a lot of babies and young children signed up for childcare. Our wonderful childcare supervisor spends the 6 months before the retreat recruiting and training childcare workers as well as planning activities, room layouts, crafts, and an overall theme. It’s a huge job and our organization is very blessed to have someone so talented and committed, because the pay is minimal!

So where is all this leading? I would like your opinions. If you, as a parent of a child with significant disabilities, were to leave your child in the care of someone else – and that someone else was essentially a stranger to you – what would be your concerns? What questions would you have? What answers would you be expecting to make you feel comfortable leaving your child? What qualifications would you expect the childcare workers to have? What would be your top three most important things to you? Would YOU be comfortable leaving your child?

The Zac Browser

As parents, grandparents, and other caregivers for children with significant disabilities, we often feel our children are more capable than they sometimes appear to be. Usually this is because we do not have the appropriate tools and supports to provide and facilitate the display of their capabilities. Teachers try to use the tools with which they are most familiar or which are readily available through meager education budgets. Therapists use the tools and techniques they learned in college and are often viewed by their administrators as being a bit too rebellious if they attempt to use unconventional tools and techniques. But when someone is willing to step outside the box of convention, the result in our children is often phenomenal.

John LeSieur is one of those people willing to step outside. Mr. LeSieur believed that with the right tools, his grandson with autism could and would want to use the Internet. Even when observing his grandson’s utter frustration with the huge array of options presented when using a PC, Mr. LeSieur didn’t give up. He decided to design a tool that his grandson could use.

Mr. LeSieur built the Zac Browser (named after his grandson, of course!), and is making it available to anyone at no cost whatsoever.

This story in last week’s Washington Post provides additional information and a link to the free browser. It’s well worth the time and effort to download if you have a child who, like Zac, prefers fewer options when working with a tool.

Good job, Mr. LeSieur, and a special thanks to all the parents and professionals who are willing to step outside the box to unleash the potential in our children.

Happy Endings

Ashley is pictured to the right with her teacher, Mrs. Artis.

Only one more week of school left, at least for all my children but Ashley, and overall it has been a good year for everyone. Chip has begun his planning for senior year and beyond. He’s evaluating colleges, taking the SAT and ACT, and doing very, very well with all his AP courses. Corey, as I mentioned a couple of months ago, has finally pulled his grades up to honor roll level – a huge, huge accomplishment for him. He has his summer filled with a performing arts camp and volunteer time at our local library. Jessica is doing ok, although her move from one high school to another mid-year did cause some consternation (more for me than her). She has some excellent transition support services being put into place, and is well on her way to the future she envisions for herself. And Ashley will just move from her regular school year to her ESY (Extended School Year) services. But, it has been an excellent year for her also.

One of the biggest contributors to Ashley’s success in school is consistency and high expectations. Amy, Ashley’s aide both at school and home, provides both of those things, and the result has been monumental strides for Ashley both last school year and this one that is ending. In addition, Ashley’s teacher this year ‘got it’. She understood that Ashley was capable of academic work, not just the life skills most school staff tried to push her towards. Unfortunately, that teacher is leaving at the end of this year, and the new teacher may not be so quick to see Ash’s potential. But the good news is that the current teacher made sure that Ashley’s IEP is academic in nature, and that IEP will follow Ashley into next school year.

Another good thing is that Amy will provide Ashley’s ESY services. So with the consistency of an excellent intervener like Amy, Ashley will be poised for more success next school year. The challenge will then be convincing the new staff of that potential. But, I do feel better about Ashley’s upcoming 8th grade school year than I have about any other school year in the past.

So a big THANK YOU to Amy and Mrs. Artis. You both support Ashley in all her academic pursuits, and you do so with love, understanding and respect. No parent could want anymore!

Something More

One of the families that participates in a listserv focused on children with deafblindness shared this with all the participants. It was written by Lori Borgman. Lori Borgman is a newspaper columnist and author. You can find her at www.loriborgman.com. Most of the time I don't enjoy reading these types of articles - articles that go on and on about how wonderful parents of children with disabilities are. But this article has a slightly different slant, and I did enjoy reading it. Hope you will also.


SOME MOTHERS GET BABIES WITH SOMETHING MORE...

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more. Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more.

You're a wonder.

Movie Time

This sounds like something not to be missed… (especially after the abysmal job CBS did on their Cold Case show last night, also on the subject of deafness and cochlear implants):

Hallmark Hall of Fame will present “Sweet Nothing in My Ear” on CBS TV. It is scheduled to be aired first on Tuesday, April 1. This is the story of a deaf mother (Marlee Matlin), a hearing husband (Jeff Daniels) and their 8-year old deaf son (Noah Valencia) and their family struggle over trying to decide whether or not the son should have a Cochlear implant. The show is scheduled to be shown again on Sunday April 20, 2008. Check your local station for time and exact dates in your area.

Here’s the description from the Hallmark website:

Suppose your deaf child could have an operation (not without risk) that might allow him or her to hear again.

Dan Miller (Jeff Daniels) and his wife Laura (Marlee Matlin) only want what’s best for their happy and healthy eight-year-old son Adam (Noah Valencia), who’s been deaf since age four. Laura opposed the surgery – an implant. Being deaf, she doesn’t consider it a disability, and believes an operation, regardless of the outcome, would make Adam feel that something was wrong with him. However, Dan, who can hear, misses talking and listening to his son. For him, an operation is worth the risk, believing Adam’s life would be easier and more complete if he could here.

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.

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

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.