Here We Go Again

Some of you may remember that I filed a complaint with my state Department of Education at the beginning of the last school year. In the complaint, I alleged that the school district was not implementing Ashley’s IEP because they did not have an aide who was sufficiently proficient in sign language assigned to Ashley. Ashley’s only means of communication is sign language.

The Department of Education agreed with me and found my school district to be in non-compliance with Ashley’s IEP. The process then started for us all to agree on compensatory services for the time missed, and other measures to ensure Ashley’s IEP would be followed.

The compensatory hours were provided after a false start, and one of the other items I insisted upon, an independent evaluation of both Ashley’s signing skills and the skills of the school-provided assistant (hired after the complaint was filed), was finally scheduled towards the end of the most recent school year.

Not surprisingly, the independent evaluation supported what I had been saying. But has that changed anything at school? Nope, not yet. The same incompetent aide (at least in my opinion and the opinion of the evaluators) was assigned to provide Ashley’s ESY services. So, what did I do? Yep, filed yet another complaint.

The newest complaint, which pretty much is a duplicate of the original one I filed last September, went in the end of last week. I’ve not heard anything yet, and the bureaucratic process moves rather slowly. To top things off, no IEP meeting has been held to determine Ashley’s program for next year, her first year in high school. No school has been selected yet either, and you know how difficult it is to get teachers and other school staff to work during the summer.

Ashley has always been a child that loved going to school, but recently has been signing, “school no go”. Her spirit has been crushed and she is very frustrated. My homeschooling efforts have increased dramatically, and she is doing well with that fortunately. But I will not give up on insisting that the school do their job.

Maybe one of these days they will realize that. I am nothing if not very, very persistent.

Hope For Independence

I’ve always wondered how Ashley would be able to travel and live independently given both her hearing and vision loss. She has a white cane, and that helps some. But, because she is also deaf, she can’t hear oncoming traffic, the sound of a siren, a car horn, a doorbell, or a smoke alarm. So short of a sighted guide and a fulltime personal aide, I didn’t know if she would ever be able to travel and live independently. But my hopes are renewed after reading this story in the Jerusalem Post.

The Ali Hope Foundation is one of only a small number of programs worldwide to train dogs for individuals who are both deaf and blind. As noted in the news story, of those programs, most, such as Leader Dogs in Rochester, Michigan, train the dogs only as guides, not assistants or alarm messengers. "Leader Dogs are trained to guide individuals who are both deaf and blind, not to alert them to sounds," states the Leader Dogs Web site. Others teach dogs to perform both guide tasks and sound alert tasks, but separately.

But the Ali Hope Foundation is providing a different perspective and the hope of independent travel and independent living for people who are deafblind. The isolation felt by many who are deafblind can be reduced by the dogs trained by Ali Hope, and my hope is that this model will also be embraced in the United States.

Good work, Tamara Meirovich!!

The Best

I love my job. Not the one that pays the bills but the one that pays my soul. I love being a mother.

I love the sweet smiles that Ashley gives me each morning when I wake her. I love the look of pride on Corey’s face when he dons his JROTC uniform. I love how Jessica’s eyes light up whenever she says the word “boyfriend”. I love that Chip usually follows my advice although he rolls his eyes when I offer it.

I love doing things to make my children’s lives special – the secret notes left in their lunch or in a dresser drawer – the junk food only meals I plan occasionally – the clean house that they are proud to bring their friends to – the special signs and sayings for each that let them know that individually I value and love them.

I’m proud of the people they are becoming. They know how to do their laundry – they know which fork to use – they know how to cast a fishing line and clean the fish they catch – they know how to grow their own food and how to cook it. They are very mannerly and compassionate. They all understand that diversity is a wondrous thing and they appreciate the abilities of every person.

I love remembering when Chip, now 18 years old, told me at age 3 and discovering that boys and girls were different, sitting in an Arby’s restaurant and telling me he was sad I didn’t have a penis like him. He said loudly enough for the retired couple sitting next to us, “I’m going to get you a penis, a big penis.” And I love that now our conversations are about careers and movies and dreams.

I love sharing stories about distant or deceased family members so my children can feel that they are a part of a whole. I love discussing the difficult subjects of life and I love that they listen to me.

I’m proud that I know how to change a g-tube, give an injection, and know the names of seven different seizure medications. I’m proud that I know what to do in the event of an asthma attack and the appropriate professional to contact when my child was exploring sexual matters in an unhealthy way. I’m proud of the advocate I have become for my children, knowing the right lawyers and the right organizations to help us.

Being a mom has never been an easy job, but it certainly been rewarding. Reflecting on my life for the past 19 years, I realize I have been very blessed – not just because I have four great kids, but because of the person they have helped me become. I like myself and I love them more than life itself.

And in case my boss is reading this, I love my paying job also :)

Thankful Thursday

Today I am thankful...

• for the special bus drivers Ashley has had for her ESY services. I wish all her bus drivers and aides could be as caring.


• that Chip is finishing up his first week as a research assistant in the VCU biomedical engineering lab. On the first day, he was a little overwhelmed and wanting to throw in the towel. But he stuck it out and is now enjoying it.


• that my garden is producing enough vegetables that I am able to share them with neighbors and friends/


• that the final step in completing my adoption home study happened this week. As soon as the final document is written up, I can begin the search to find my new son or daughter


• for suntan lotion and self-tanners. I can look like I've been out on the beach without the worry of skin cancer


• for VOPA (the Virginia Office for Protection and Advocacy) for once again assisting me in ensuring Ashley receives the services to which she is entitled


• for lazy summer afternoons spent on a blanket under a cool shade tree


• that Ashley hasn't had an ear infrection for about three weeks now - a new record!


• that Jessica is no longer angry with me because I won't let her have a 40 year old boyfriend (she is 18 years old).


• that beginning July 1st, it will be illegal to drive and text message in my state.

Special Exposure Wednesday

When I became an adult and moved into the housing market, I always dreamed of a house with a large magnolia tree in the yard. About eleven years ago, I found and purchased that house - huge tree and all. Not only did I get the type of tree I wanted, I got one that produces the most magnificent, creamy white blooms every year! My son took this picture of this year's first bloom...



Be sure to check out all the other Special Exposure shots at 5 Minutes For Special Needs!

Happy Birthday, Helen!

Every year the last week of June is devoted to one thing - recognition of people who are deafblind. While the purpose of Deaf-Blind Awareness Week is to pay homage to Helen Keller, the deafblind woman who was born this week, the week also focuses on increasing public awareness and understanding of deaf-blindness.

According to the Helen Keller National Center (HKNC), about 70,000 people have hearing and vision loss. More than a decade ago, Deaf-Blind Awareness Week became an event officially recognized by the Federal government, and it is celebrated annually by every state and many countries around the world.

People with deafblindness are as unique and different as people everywhere. Not every person with deafblindness is like Helen Keller, although some are. As most of my readers already know, my daughter, Ashley, is deafblind and our family is part of a statewide support group of other families whose lives have been touched by deafblindness. Here is a video of the children and their families who attended our last annual family retreat. The uniqueness of each child comes shining through!



Another organization that supports the deafblind in the UK is SENSE. They have developed an incredible website in support of deafblind awareness week, and I urge you to visit and enjoy the sensory experiences they have showcased. One of the best features of their new website is the section that shows videos that take the visitor into the world of people who are deafblind. One of my favorites is shown below, but there are also many other interesting videos.



I hope you will celebrate this week as we will – by getting back in touch with all your senses, and by learning to appreciate the beauty of everyone, regardless of their level of ability!

Happy Birthday, Helen!

We Need a Change

Summers are tough for my 16 year old son, Corey. While he complains about the structure and demands of the school year, when summer rolls around, he moves about like a zombie, never quite knowing what to do.

Corey is not a kid who is self-motivated. As much as I have tried to help him with that, I'm sorry to say it just isn't working. He needs someone to tell him what to do, how to do it, and when to do it. And honestly, I'm a little tired of doing that, and feel like at age 16 I shouldn't have to tell him to brush his teeth, clean his room, wash his clothes, etc. etc.

Since he joined my family four years ago, I have tried a lot of different things to address this issue. I've tried chore charts, very, very detailed chore charts. I've tried positive reinforcement. I've tried negative consequences. And while those things may have an initial effect, they usually stop working after a day or two.

So Corey's summer is spent watching TV, listening to his IPod, wandering around the house, or getting into trouble for not doing what he should be doing. I asked him to get a job for the summer, and he showed little to no interest. He gets annoyed because his brother does have a job, and money to spend, but not annoyed enough to do anything about it.

June's not even over yet and we are already grumbling and snapping at each other. I really need some ideas...

In The News....

Why we must all be careful on the big Internet playground. Things are not always what they seem. Even people who write very compelling stories about their child with rare diseases may not be telling the truth…

Blogger Lies About Having Child With Rare Disease


Pediatricians are taking a stand on bullying. We’ve moved past the ‘kids will be kids’ mindset, and real action must be taken. Next month, the American Academy of Pediatrics will publish the new version of an official policy statement on the pediatrician’s role in preventing youth violence. To read more about this very important topic:

Pediatricians Against Bullying


Have you struggled as much as I have trying to get appropriate Braille instruction for your child? Apparently a lot of parents have, and the National Federation of the Blind is doing something about that – at least in Utah. Hopefully the NFB lawsuit will raise awareness and perhaps even help make changes for children across the United States.

National Federation of the Blind Files Suit


This story from my alma mater troubles me. I am quite aware of the fact that parents of children who are deaf have very definite views on whether to let their children have cochlear implants. As I have written many times on this blog, I don’t believe Ashley needs ‘fixing’ with a device implanted in her brain just because she is deaf. However, I respect the rights of other parents to make a different choice for their child.

I am concerned though when doctors and schools appear to make those decisions for families. My school district, for example, embraced an oral deaf program to the exclusion of sign language programs many years ago. As a result, getting sign language support for Ashley has been an ongoing struggle for me.

Is Old Dominion University following the same path as my school district…?

No Middle Ground?

Thankful Thursday

Today I am thankful...

• for the beautiful pictures Amy and her friend took of Ashley and presented to me on my birthday. I LOVE THEM!


• for the wonderful time the boys and I had in Baltimore this past weekend. We walked the Inner Harbor, Little Italy, and the most exciting thing, saw a Major League baseball game.


• for my vegetable garden bounty - cucumbers, tomatoes and squash by the basketfulls


• that Chip and I survived his college orientation held two days this week. Now if I can just get over the shock of the cost of his books...


• for the special birthday card I received from my friend, Lynnette, and that her sweet daughter, Brooke, is feeling better this week


• and that June is almost over. This month has been way, way too busy and I am looking forward to July. My July calendar only has one square filled. I know that will change but hopefully not too much.

Special Exposure Wednesday

This past weekend, the boys and I took in the Atlanta Braves/Baltimore Orioles baseball game in Baltimore. Even though the game wasn't scheduled to start until 1:30pm, the boys insisted we arrive by 9:30am. While waiting (a really long time) for the gates to open, we visited the Sports Legends Museum. I think Corey has some very big shoes to fill.....



Make sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Everyone Deserves a Prom

The senior prom is a right of passage for high schoolers. I remember feeling so grown up at my prom, so beautiful, and so special.

That's exactly what these prom goers felt...I dare you not to smile, and I know you will feel a lump in your throat.


Residents at St. Mary's Home for Disabled Children in Norfolk were treated to a prom

(Choose the video titled Prom Night)

Baltimore - You Rock, Even For Those Who Roll!

The boys and I had a wonderful time in Baltimore this past weekend. Chip wanted to celebrate his high school graduation by going to a Major League baseball game, and to make it all even more special, his favorite team, the Atlanta Braves were playing Corey’s favorite team, the Baltimore Orioles. How could I say no to that?

We headed up Saturday morning, spent the day exploring the Inner Harbor area of Baltimore, and checking out Camden Yards, the stadium where the game was being held on Sunday. We had some great meals, explored the area known as Little Italy, and then checked into our hotel to rest up for the next day.

For those readers who know me well, you can probably guess that I was also checking out everything for accessibility. Even though Ashley wasn’t with us, that mindset of accessibility is always with me, and in Baltimore, I was pleasantly surprised.

Everything in the Inner Harbor area was accessible. The restaurant where we had lunch, ESPNZone (the boys were in heaven), was also very accessible, and Ashley would have loved all the TV screens and flashing lights.

Our hotel, Homestead Suites (a Hilton Company chain), was also nicely accessible. The bathroom was large enough to accommodate a wheelchair, and even though it wasn’t represented as a handicapped accessible room, the shower did have grab bars and the rest of the suite had wide hallways. Right outside all the elevators were containers of antiseptic waterless hand cleaner, a nod to the H1N1 flu I’m sure, but still a welcome feature for someone concerned about germs.

The most outstanding accessibility surprise was Camden Yards, home to the Baltimore Orioles. The bathrooms were very large and very clean. The staff was very welcoming and professional. And the number of handicapped accessible seats boggled my mind. They completely surrounded the field from one side to the other (see the light teal seats on the chart above). Those seats, like all the seats at Camden Field, had a great, unobstructed view of all the action. I’m not an Oriole’s fan, but this was the absolute best baseball stadium I have ever seen.

So all I have to say is “Well done, Baltimore, well done!”

High School Buddies

What's one of the saddest things about Ashley going to high school next year? The boy who lives for her every smile will be going to a different high school. We'll all miss you terribly, Justin!



(Pictured in the last picture with Ashley and Justin is Mrs. Sheets, Ashley's teacher.)

Thankful Thursday

Today I am thankful...

• for my first harvested cucumber of the season! Sliced, with a touch of ranch dressing and sprinkled with cilantro from my herb garden - yummmm, so good!


• that So You Think You Can Dance is back on TV. I'm not exactly sure why, but I love all the dancing shows on TV these days.


• for the exciting weekend the boys and I have planned - a trip to Baltimore for a Braves-Orioles baseball game


• that Ashley seems to be getting over her ear infections. She is back to sleeping 3-4 hours at a stretch, and I like that very, very much.


• that school is almost over for this year. I know by the end of the summer I will be wanting it to start again, but for now, I am going to enjoy the slower pace.


• that I reconnected this week on Facebook with my friend, Sharon. We MUST plan a lake visit soon!


• that everything I have been trying to tell my school district about Ashley's abilities has been validated by an evaluation recently completed by a local consulting group that specializes in children who are deaf or hearing-impaired.


• for my special, brilliant, handsome, compassionate son who is graduating today. Check out my blog post about my son, Chip, at 5 Minutes For Special Needs.
  

Special Exposure Wednesday

I'm so excited! I have little vegetables already in my garden. This has been a very good year for both rain and sun and my vegetable plants are flourishing. I can't wait for tomato sandwiches, marinated cucumbers and zucchini-corn fritters!



Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Next Time, Ask

Last Saturday I attended something billed as a ‘Summer Institute’ for families of children who are deaf or hearing impaired. This ‘institute’ was held from 9am to 4pm at one of our local parks and was touted to have consultants from our state Department of Education, our state’s deafblind project, the Department of Rehabilitative Services, Resources for Independent Living, and other similar groups.

The day was arranged and sponsored by a local group called the Parent-Child-Advocate Program. It’s a group headed by a psychologist who is not deaf but who claims to offer assistance to ‘diverse’ populations. I attended a sign language class recently with this doctor’s intern and I must admit, she was quite taken with her signing ability. Unfortunately, the teacher and the rest of the class were not.

So, this whole thing baffled me a bit. I didn’t understand its structure or intent. And what I found at the ‘Summer Institute’ did nothing to clear up my confusion.

The meeting was held in an old carriage house. The facility was barely accessible and every noise echoed horribly. After just a few minutes in the room, Ashley couldn’t take it any longer. I also noticed that only one of the presenting groups had a representative present. The other groups had set up tables and left printed material but no person was present.

I felt uncomfortable, and Ashley was even more uncomfortable than I. The only bathroom facilities weren’t even close to wheelchair accessible, and I don’t believe the organizers (the doctor’s staff) took into account that not all deaf children are mobile.

Hopefully, this was just another of those organizations that has a good idea but doesn’t know how to implement the idea. I do have a suggestion for them – next time, ask the people you are targeting as attendees. Ask parents what works and what doesn’t work for their children. Ask both the children and the adults who are deaf what they have found will work for them. And then implement those ideas.

Please do not assume you know what will work. You are not deaf – you are not hearing impaired. None of you as far as I could tell had mobility issues or were vision impaired. If you really want to provide something of value, you must know your target audience.

And if the goal was to drum up business for the good doctor (his website lists him as a ‘life coach’), be upfront about it.

If you wondered why Ashley and I left after just 45 minutes, now you know. I hope you care.

Surfing - The Good and The Bad

While I surfed the web this weekend, I found two stories I wanted to share. One is very good news, and one if very bad news. First the good news:

From the HumanWare website - HumanWare, in partnership with the Washington State Office of Deaf and Hard of Hearing (ODHH), has developed a new deafblind communication system. The DeafBlind Communicator (DBC) is the result of collaboration between deafblind individuals and focus groups, professionals from both the deaf and blind communities, and HumanWare’s engineering and marketing teams. The basic DBC provides three types of communication for deafblind users: face-to-face, TTY, and SMS Texting.

Check out their website and find out more about this remarkable device that opens the door to the world a little wider for people who are deafblind.

Now the bad news:

Apparently the life of a child born addicted isn't worth much. The child's parents abused and neglected her after birth, resulting in the child's deafblindness, broken bones, and cerebral palsy. Although the parents were arrested and taken to court, the father received a 4 1/2 year sentence and the mother a 3 year sentence.

Read more about this horrible story here...I wish I could bring the little girl home with me.

Paging Dr. McYummy

Ashley and her MRI films were seen today by her neurosurgeon, affectionately known as Dr. McYummy. He is such a handsome man with piercing blue eyes and the most wonderful bedside manner. He seems to care - he definitely listens to my concerns - and he seems to like Ashley a lot. I wish I could say that about all her doctors.

Ashley's brain tumors had not changed at all since the MRI 6 months ago. So, at the doctor's advice, we are going to go for a year until the next MRI. It's a little scary, but I am going to give it a try.

There's both good and bad about that decision though. The good is that Ashley won't have to be sedated and won't have to go through the hospital procedure as often. The bad is that we won't see Dr. McYummy as often :(

P.S. That's Dr. McYummy in the picture above looking at Ashley's brain.

Thankful Thursday

Today's Thankful Thursday post is late, and that's because Ashley had an MRI under anesthesia today. We had to be at the hospital early, but still waited several hours before the actual procedure. If there is one thing that Ashley doesn't do well, it's waiting.

So today I am thankful that the MRI is over, and that Ashley probably won't remember the battle we had getting her to lie down on the stretcher for anesthesia.

I am thankful for the wonderful recovery room nurses. Since Ashley has these MRIs every six months, the nurses remember her, and know how important it is to keep me posted on how Ashley is doing. They make sure to call me to recovery just before she completely wakes up so my face can be the first one she sees.

I am thankful for my son, Chip, who has gone with us to the last two MRIs. It's comforting to have him by my side, and his muscle is ever so helpful for lifting wheelchairs and a certain reluctant 14 year old girl.

And, I am thankful that Ashley was back to her normal self within an hour of arriving home. It's amazing how therapeutic some macaroni and cheese can be!

Our visit with the neurosurgeon is tomorrow, and I am thankful we don't have to wait long to know the results of the MRI. If the three tumors in Ashley's brain are still not growing, then we may be able to go to once a year MRIs.

And most importantly, I'm thankful for the most amazing and beautiful 14 year old girl there ever was!

Special Exposure Wednesday

Even a girl with a vision impairment so significant that she can only see about an inch from one eye is still lured by the teenage-pull of texting!





Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Great New Resource

The Center for Education Research Partnerships at the National Technical Institute for the Deaf, a college of Rochester Institute of Technology, has launched a website intended as a source of unbiased information for parents, teachers, and other professionals who work with deaf children.

About 90 percent of deaf children have hearing parents, "so many times those parents feel overwhelmed and at a loss to find resources to answer questions they may have," said a press release from the center.

The information is presented in a Q&A format and covers a lot of ground, from acceptance of cochlear implants in the deaf community, to issues of social development. But the site will be even better when there are more questions archived there. The people answering the questions are experts in this field, so anyone interested in this topic should definitely take advantage of this resource.

Cart Before The Horse?

Let's see, It's June 1st and there are only a few days of school left. By now, Ashley's IEP team should have met and developed both an ESY IEP and the IEP for next school year. Ashley is transitioning to high school, and as a team, we need to discuss the options for which high school she will attend. We have had no meeting and no meeting dates are set yet, but....

In the mail yesterday, I received a letter from one of the high schools which would be a possibility for Ashley to attend next year. Seems that high school already has her listed as a student for the 2009-2010 school year, and they have already assigned her to classes.

Silly me, I thought we might need to have her IEP developed - you know, goals and objectives and a placement decision - before that letter was sent.