Trying Something New

For the last couple of years, Ronnie has enjoyed playing basketball and lacrosse with his friends at Sportable, but now he is branching out and trying something new - kayaking! And as with the other sports, he has picked up the skills rather easily and is having a blast!

The Good, The Bad, and The Absolute Worst

Last week after Ashley's appointment with the vascular surgeon, I took her back to school and decided to have a couple of hours of 'me time'. I went to one of our local malls, had lunch, and did a little shopping. While I had lunch in the mall food court, I did a lot of people watching. And I don't know about the malls in your area, but around here they are magnets for group home staff and their residents. Way, way back in 2006 (have I really been writing this blog that long?!), I wrote about a group home watching experience, and the experience wasn't pleasant. Other than for one good thing, today's experience was no better.

THE GOOD

A large group of adult men came in with their group home staff. They were all prepared to eat lunch, lunch they had brought with them. As they all began to sit down ('clients' at one table, 'staff' at another), one staff person touched the shoulder of a 20-something man and said, 'Let's you and me go eat over there so we can watch the girls go by." The 20-something man laughed and off they went - two guys, enjoying lunch, and watching girls.

THE BAD

I've already alluded to this. Staff sit at one table - 'clients' at another. No one talks to each other unless it is a staff person shouting orders. There's no enjoyable conversation over a meal, just another task to complete, and way for the group home to check off that they went 'into the community.'

THE ABSOLUTE WORST

Another group of staff/clients entered the food court. Most of the clients had brought their lunch and went to a table to sit. But one gentleman wanted to buy his lunch. It was pretty obvious that he would need some assistance. But rather than offer that assistance, the staff person said, "George, why don't you buy my lunch too." Since we as a society raise people with disabilities to be subservient, George said, "OK." I have no idea if he really wanted to or not, but George pulled out his wallet, and both men ordered from ChikFilA. George paid, paid with part of the 28% of Social Security Disability Insurance that he is allowed to keep (the rest goes to the group home). It made me sick...

There just has to be a better way....

Jack Carroll

Love, love, love this kid!!!  Happy Friday everyone!

Answers Finally

Yesterday Ashley saw a vascular surgeon, and we finally have answers about why her leg and foot are swollen!

If you remember this journey, it all began last October. After many blood tests, a cat scan, and two ultrasounds - after too many visits to the pediatrician to count and one to an oncologist - yesterday's visit with the vascular surgeon brought our search to an end.

Ashley has lymphedema praecox.

Her body is not moving lymphatic fluid as well as it should. It's a problem that is seen usually in young women in their late teens to their early thirties. And although there is a surgical procedure that could deal with the issue, it comes with some negative side effects - for instance, a propensity for the body to form blood clots. The vascular surgeon said that because her swelling is moderate and not severe that he would not recommend the surgery. So his recommendations are:

• Elevate the leg and foot whenever possible
• Wear a compression sock
• and get as much exercise as possible

The last one sounded a little strange to me, but apparently exercise helps to move the fluid better.

I'll get the compression sock this weekend (it's a prescription item), and will see if I can wrestle Ashley's leg into it, and we'll try a little more time on the treadmill too. I'm just so glad this ordeal has come to an end, and still wonder if it really had to take this long....

Special Exposure Wednesday

I love Spring, especially when my tulips bloom! (Absolutely stunning pictures, Chip!)

Troubling

Wow!  I'm really not sure how I feel about this video.  I know I don't like my school district employees being portrayed as Nazis, that's for sure.  Yes, there were times early on in Ashley's education, when I might have felt this portrayal came close, but it still inherently troubles me.  What are your thoughts?

My Brother From Another Mother

Everybody needs a friend - that one special friend that shares everything with you.  You never feel lonely when you know your friend is near.

This past weekend we did something a little wild and crazy.  We decided Cooper, our lab, needed a buddy, and so we brought Lewis home!

Lewis is a rescue dog that is a mixture of border collie and lab.  He's smaller than Cooper but full of spunk!  They became instant friends, and have spent the last two days running and playing constantly in our back yard.

Welcome home, Lewis!

What I Needed

This week...the tragedies, the horrors, the pain and suffering...
I need to hear the voice of an angel.

This artist, this song...exactly the angel voice that I needed.

Really? Is There Such a Connection?

I subscribe to a Facebook group called United By Spina Bifida. Although most of the posts are from new parents or parents of young children with spina bifida, it is interesting to learn more. Since Ronnie was 15 years old when he joined my family, my exposure to spina bifida was very limited. I feel like I have learned a lot in the last three years, but I do like hearing the perspectives of other parents and other adults with spina bifida. But this past week, I read something that surprised me.

One of the adults in the group posted about adult men with spina bifida not having social skills, and specifically, entering into more intimate conversations very soon after meeting someone. Then many parents and adults with SB agreed with the statements. I had never known that having spina bifida might include a lack of social skills.

Ronnie's social skills are not the best, and they are particularly rough in the area of relationships with the opposite sex. He so desperately wants a girlfriend, and that means he will seek out young women and immediately move into intimate conversations with them. The 'love' word is tossed around after just knowing someone a week or so, and if the object of his attention doesn't reciprocate, he gets very frustrated. Since I monitor his Facebook postings, I can tell that the girls he pursues get very uncomfortable very quickly.

He has had appropriate male role models in his life, or at least the last 4 or so years of his life. And he has my 22 year old son around all the time modeling appropriate behavior. Chip and I have spoken to him about the issue many times also. And just this week, Ronnie's best friend tried explaining to him how he needed to just go a little slower and how he needed to seek out appropriate connections with women. All that did was make Ronnie angry.

So, this is an ongoing challenge and one I need to find ways to assist Ronnie in dealing with, but it never crossed my mind that his behavior could be a result of his spina bifida. And, I still don't really understand the connection, the features of spina bifida that could result in this. That's why I was suprised that so many people agreed with the originial Facebook poster.

Have any of you ever heard of or experienced something like this? Does the comment on Facebook make sense to you? Do you think there could be a connection between spina bifida and lack of social skills, and particularly those that involve interactions with the opposite sex?

Special Exposure Wednesday

Bouncing is always better when you have a big brother to help you!

A Little Help From Your Friends

Having a child or family member with a significant disability almost alwaysdictates that you find a support system, a group of families that have 'been there, done that'. The systems - medical, insurance, educational, adult services - are much too complicated to travel alone.

I was very blessed early on, right after I adopted Ashley, to connect with the Virginia Deafblind Project at the Partnership For People With Disabilities as well as a family-centered support group named Dreamcatchers. But in my state, Virginia, keeping families connected when they are spread around a large state is difficult. Dreamcatchers did its best for many years, but busy lives and long drives finally led to its demise.

The good news is that there is a new family-centered group that is blooming. The information about that group is listed below. I encourage anyone who can make the drive to their meeting do so. Trust me, you won't regret it. And here is another family's story that illustrates that very point...




Connections Beyond Sight and Sound
Maryland Deaf-blind Project
DC Deaf-blind Project
VA Deaf-blind Project
Tri-State Area Family Leaders
NFADB


“Meet and Greet Family Event“

Location: University of Maryland
1308 Benjamin Bldg
College Park, MD 20742

Date: April 28, 2013
Time: 12:30 – 2:30 PM
*Snacks and refreshments will be served

*RSVP by April 24th, 2013 – Please contact Susan Wyatt, Swyatt(at)umd.edu or Donna Riccobono, donnaric(at)umd.edu

A Step In The Right Direction

I've been trying hard to live a healthier lifestyle, and provide healthier choices for my family.  I've learned from past attempts at this that we need to go slowly making changes or the sudden shift becomes something we can't sustain.

So my first step was getting a Vitamix blender.  I researched and researched different blenders but have been so very happy with the Vitamix.  I use it to make smoothies every morning.  I started with just fruit smoothies knowing that would be an easier sell to my family.  But over the last couple of weeks, the fruit smoothies have turned into green smoothies.  I just throw in a handful of baby spinach, and other than turning the drink green, no one can tell that there is spinach in it.

I've also made the smoothie size small for my kids, letting them still have a portion of the breakfast food that is familiar - cereal, yogurt, waffles.  We've even expanded to having the smoothies, or juices, sometimes with a meal - apple carrot juice for example, instead of iced tea.

We've also been eating more fish than before and eating less red meat.  That hasn't been a problem to sell because everyone seems to like fish.  We make the fruit and vegetables the biggest serving on our plates and the meat or fish portion a little smaller.

And, we've added exercise.  Chip, Ashley and I like the treadmill and Ronnie likes going outside an playing basketball.  We're going to stop sending our dog to doggie daycare and take him for twice a day long walks.  In addition to saving money, we'll also be getting exercise.  And we are planting a garden so we have lots of really fresh veggies this summer!

It's a slow journey, but at least it is a journey in the right direction.  We still have our pizza and fast food sometimes, but I'm noticing that we're not missing it as much as I thought.  I'll update as our journey progresses, but even with the small changes made to date, I am feeling much better and think my children are also!

Ruled a Homicide, but No Charges Filed

Robert Ethan Saylor died as a result of asphyxia after being restrained by law enforcement when he refused to leave the movie "Zero Dark Thirty." Despite public outcry and the medical examiner's ruling of homicide, no charges were filed against police.

Check out this article from Disability Scoop and this one from the Huffington Post and let me know your thoughts.

The Powers That Soon Will Be

There are so many things I need to get done now that both Ronnie and Ashley are 18 years old.  Things like applying for Social Security Disability, and getting Powers of Attorney for medical and educational decisions.  But have I done any of it yet?  No...

I've been through the SSDI stuff for my oldest daughter, Jessica, and it is a monumental hassle.  I imagine it will be even more so now with the sequester cutbacks.  But, I really need to get started.  They both will qualify, and they both are missing out on money while I drag my feet.

I've also done the powers of attorney for Jessica, and because one of THE BEST ATTORNEYS IN THE WORLD helped me with it, things went quickly and smoothly.  I have no good reason why I haven't started the process for Ronnie and Ashley, but as of today, medical records kicked my butt and told me to get cracking.

In the ongoing saga to find out why Ashley's leg and foot are swollen, I scheduled an appointment with a vascular surgeon as recommended by the hematologist/oncologist we last saw.  When we saw the hematologist/oncologist, I got copies of Ashley's cat scan and ultrasound from the hospital that performed those tests and took them to the doctor's office.  All that happened in early March.  Then on March 29th, Ashley turned 18 years old.

The hematologist/oncologist can't find the disk of images that I delivered to her office, and of course, the vascular surgeon needs to see those films.  So I contacted the hospital today and asked for another copy of the films on disk.  The first indication that something was amiss was when the hospital records person asked me if Ashley would be picking up the new disk.  Jokingly, I said no because she was blind and not allowed to drive.  The records person didn't find that as amusing as I did, and promptly told me that if I didn't have a power of attorney, I could not pick up Ashley's records.

Cue momentary PANIC.  I quickly emailed THE BEST ATTORNEY IN THE WORLD and asked how quickly we could do the powers of attorney.  She said Friday, which will give me plenty of time to order and pick up Ashley's disk from the hospital before the appointment with the vascular surgeon.

Okay, Social Security Office, are you ready to start kicking me now???

Special Exposure Wednesday

The girl loves her basketball!  And she's not bad for a blind kid!

His Profession Left Him

I found the letter below on the Washington Post website.  It's from a teacher, a teacher of 40 years, who decides the world of education as it exists today is not what he signed up for.  I applaud him, and I bet there are many, many more teachers who feel exactly the same.  And trust me, there are many parents who agree.

Mr. Casey Barduhn, Superintendent
Westhill Central School District
400 Walberta Park Road
Syracuse, New York 13219

Dear Mr. Barduhn and Board of Education Members:

It is with the deepest regret that I must retire at the close of this school year, ending my more than twenty-seven years of service at Westhill on June 30, under the provisions of the 2012-15 contract. I assume that I will be eligible for any local or state incentives that may be offered prior to my date of actual retirement and I trust that I may return to the high school at some point as a substitute teacher.

As with Lincoln and Springfield, I have grown from a young to an old man here; my brother died while we were both employed here; my daughter was educated here, and I have been touched by and hope that I have touched hundreds of lives in my time here. I know that I have been fortunate to work with a small core of some of the finest students and educators on the planet.

I came to teaching forty years ago this month and have been lucky enough to work at a small liberal arts college, a major university and this superior secondary school. To me, history has been so very much more than a mere job, it has truly been my life, always driving my travel, guiding all of my reading and even dictating my television and movie viewing. Rarely have I engaged in any of these activities without an eye to my classroom and what I might employ in a lesson, a lecture or a presentation. With regard to my profession, I have truly attempted to live John Dewey's famous quotation (now likely clich with me, I've used it so very often) that "Education is not preparation for life, education is life itself." This type of total immersion is what I have always referred to as teaching "heavy," working hard, spending time, researching, attending to details and never feeling satisfied that I knew enough on any topic. I now find that this approach to my profession is not only devalued, but denigrated and perhaps, in some quarters despised. STEM rules the day and "data driven" education seeks only conformity, standardization, testing and a zombie-like adherence to the shallow and generic Common Core, along with a lockstep of oversimplified so-called Essential Learnings. Creativity, academic freedom, teacher autonomy, experimentation and innovation are being stifled in a misguided effort to fix what is not broken in our system of public education and particularly not at Westhill.

A long train of failures has brought us to this unfortunate pass. In their pursuit of Federal tax dollars, our legislators have failed us by selling children out to private industries such as Pearson Education. The New York State United Teachers union has let down its membership by failing to mount a much more effective and vigorous campaign against this same costly and dangerous debacle. Finally, it is with sad reluctance that I say our own administration has been both uncommunicative and unresponsive to the concerns and needs of our staff and students by establishing testing and evaluation systems that are Byzantine at best and at worst, draconian. This situation has been exacerbated by other actions of the administration, in either refusing to call open forum meetings to discuss these pressing issues, or by so constraining the time limits of such meetings that little more than a conveying of information could take place. This lack of leadership at every level has only served to produce confusion, a loss of confidence and a dramatic and rapid decaying of morale. The repercussions of these ill-conceived policies will be telling and shall resound to the detriment of education for years to come. The analogy that this process is like building the airplane while we are flying would strike terror in the heart of anyone should it be applied to an actual airplane flight, a medical procedure, or even a home repair. Why should it be acceptable in our careers and in the education of our children?

My profession is being demeaned by a pervasive atmosphere of distrust, dictating that teachers cannot be permitted to develop and administer their own quizzes and tests (now titled as generic "assessments") or grade their own students' examinations. The development of plans, choice of lessons and the materials to be employed are increasingly expected to be common to all teachers in a given subject. This approach not only strangles creativity, it smothers the development of critical thinking in our students and assumes a one-size-fits-all mentality more appropriate to the assembly line than to the classroom. Teacher planning time has also now been so greatly eroded by a constant need to "prove up" our worth to the tyranny of APPR (through the submission of plans, materials and "artifacts" from our teaching) that there is little time for us to carefully critique student work, engage in informal intellectual discussions with our students and colleagues, or conduct research and seek personal improvement through independent study. We have become increasingly evaluation and not knowledge driven. Process has become our most important product, to twist a phrase from corporate America, which seems doubly appropriate to this case.

After writing all of this I realize that I am not leaving my profession, in truth, it has left me. It no longer exists. I feel as though I have played some game halfway through its fourth quarter, a timeout has been called, my teammates' hands have all been tied, the goal posts moved, all previously scored points and honors expunged and all of the rules altered.

For the last decade or so, I have had two signs hanging above the blackboard at the front of my classroom, they read, "Words Matter" and "Ideas Matter". While I still believe these simple statements to be true, I don't feel that those currently driving public education have any inkling of what they mean.

Sincerely and with regret,

Gerald J. Conti
Social Studies Department Leader

Cc: Doreen Bronchetti, Lee Roscoe
My little Zu

A Step In The Right Direction?

I am taking one more small step forward in trying to figure out why Ashley's right leg, ankle and foot are still swollen - still, as in since last October.

Remember a week or so ago, I told you that the hematologist/oncologist reviewed Ashley's cat scan and ultrasound results and said the problem was an abnormal external iliac vein.  She suggested we see a vascular surgeon.  And although we have seen many, many specialists over the years, a vascular surgeon is not one of them.

I asked the pediatric group that sees Ashley to recommend someone.  It took them a couple of weeks to come up with a name, but at least I have one now.  I did a little research on the person they suggested, and he at least as the credentials and experience I am looking for.  Later today, I will call for an appointment, and hope that it doesn't take forever to get one, like is sometimes the case with specialists.  Then we'll check out his bedside manner and find out if he has ever dealt with a person with significant special needs...

Keep your fingers crossed!  I'm really hoping we get some answers sooner rather than later.  And oh yea, her leg, ankle and foot are still very swollen.

Easing Into Transition

Transition is kicking my butt.  Transition, as in the things that schools should start doing when is student is 14 years old but wait until they are 18 or even older...Transition, as in putting families and students in contact with agencies that will provide support (or not) once the student leaves school.  I've been through this twice already, so you would think I might have an easier time with it now.  But that just isn't true.

Both Ronnie and Ashley are of the age to begin transition planning.  Their school is doing a decent job holding up their end of the deal, and I haven't really pushed yet on the other agencies, so I can't complain too much about them just yet.  The part that is kicking my butt is the realization that so very much is about to change.

People always say that children with special needs don't handle change well, especially a child with deafblindness or serious medical issues and deafness.  But I think the main issue is that I am not handling change well.

When children approach this time in their lives, parents are forced to accept a future they may fear or dread.  Everything is going to change - the security of going to a school setting each day, my knowing that my children are in school; as I've mentioned before, their peers are their same age, not much older adults; and the hardest thing of all for me to accept - my own mortality and wondering what will become of my children who currently depend on me so very much.

Yes, yes, I am doing all I can to make them as independent as possible.  Yes, I have made financial decisions for their future.  And yes, I will ensure services are in place as they enter adulthood.  But then I see Ashley who starts signing 'Momma' whenever I just leave the room for a minute.  And Ronnie who has already endured so much abandonment in his life will one day face it again.  Will they understand?  Ronnie, yes...Ashley, not so much.

And yes, I am an obsessive compulsive person and I make sure everything is how they need it to be.  Who will do that for them when they are 30, 40 and 50 years old?

The reason I am sharing all this is that I want school staff and staff from other support agencies to understand that transition is more than just putting services in place.  It's also managing change, response to change, and fears about that change.  Try to be more sympathetic.  Try to couch your discussions less clinically and more empathetically.  Try to understand that transition affects more than just the student, and try to know, really know, how life-changing things are going to be for everyone in the family.  The student that you show up at an IEP meeting to discuss options with is more, much more than just a student.  He is a son, she is a daughter, a brother, a sister, a niece or nephew.  Part of a whole, a whole which needs support during times of transition.

Special Exposure Wednesday

There's nothing better than a birthday lunch at your favorite pizzeria!  For a child that started life with a G-tube, followed by years of feeding therapy, this is a wonderful sight!

Choices

I need someone to tell me what to do.  I have to make what I feel is a very important decision for Ashley, and I am having a difficult time doing that.

Ashley got a slot on our state's Medicaid DD (developmental disabilities) waiver at the end of last year.  Having that slot means she can access more services than in the past.  I'm trying to decide which of the new services to access, and it is not easy.

In addition to still having access to personal care aide services, one of the new services Ashley qualifies for is Day Support.  Our area has several day support programs - some geared specifically towards adults with disabilities and some that include children.  Their definition of 'children' is any child that is still in school (up to age 22).  Because Ashley's personal care aide is leaving at the end of the school year, and because it is very, very difficult to find good PCAs, I decided to look at the day support programs.

I've narrowed the acceptable day support programs to two.  One supports a population of people who are older, in some cases significatly older than Ashley.  They don't have what they call an after-school program, and that is probably why there are not many people Ashley's age there.  On the positive side, the staff seemed very caring and committed.  Their facility is in an office complex not too far from our home and in the county in which Ashley attends school.  The office complex means there is not a lot of wide open space, but rather lots of different rooms (formerly offices?).  Their hours are 9am-4pm, times which really don't work for me to get an 8 hour work day in.

The other program is one that my daughter Jessica attended many years ago, and I didn't like it at all back then.  But I toured there on Monday, and the facility is new (just two years old),  and it's much better.  That program does have an after school program, so at least for the next four years, Ashley would be with same-age or younger peers.  The facility was designed and built specifically for the people that it serves, so the flow is better than the first program and there are lots of open spaces.  Their hours are 8:30-4:30, closer to getting my work day in, and when school is in session, their school age program is open until 6pm.  But the catch with this program is that it is not in my county school district and getting the school bus to take Ashley there after school might be a battle, and a battle I may not win.  Medicaid offers transportation services but they are TERRIBLE, and the only time I did try it for Ashley, I strongly believe she was abused.  So, we're not going there again.

The second program also offers vocational services for adults, so it might be something to support her throughout adulthood.

I think just by writing this all down, I am leaning more towards the second program, but that still means I have to work out the school bus issues.

What would you do in this situation?  Which way would you lean?

Tee Hee!

Ronnie's annual IEP meeting was last Thursday.  Besides all the normal glowing reviews of his performance, his teacher mentioned how well he was doing with their greenhouse and garden project.  She said he was a great weeder.  That was music to my ears!  Friday after school was sunny and warm, and I decided Ronnie needed a little more practice on those gardening skills!