Friday, August 22, 2014

Summer Done, School Year Begun

Thankfully, we have survived yet another summer. School is back in session in just a few days, and I think both Ronnie and Ashley will be glad to see that day get here.

Ronnie's biggest problem this summer was boredom. Unfortunately, he is not a go-getter type of guy and wants to rely on others to direct his social calendar. Since he is somewhat particular about what is on his social calendar, he also spent a lot of the summer complaining about that. He is a young man that needs to find the motivation that lives within himself, and I am not sure how to help him do that.

Ronnie did participate in a lot of wheelchair sports over the summer, and I know he enjoyed those. He played wheelchair lacrosse, did two sessions of kayaking camp, began training for a half marathon that is coming up this November, and accompanied his brother, Chip, on one of the popular biking events in our city.

Ashley's summer began as usual with ESY services. I know I have said in the past that I wasn't sure we would continue with those, but now I am sure - NO MORE ESY SERVICES! The services are not designed with the individual student in mind, and most importantly the summer staff seems to have no clue how to educate a student with deafblindness. We're done!

In addition to ESY Services, Ashley also started attending a day support program. I had some misgivings in the beginnning, and was really worried because I see day support playing an important role in her future. But despite my early concerns, the day support program turned out to be a very positive experience for her. She is happy and excited to go there every morning, and she comes home in a great mood each afternoon! I also had a tutor that worked with Ashley two days a week at the day support program (since ESY was such a waste), and that combined with the new adventures provided by the day support program have really helped Ashley mature and become more independent this summer.

I believe Ashley is in a good place for starting the new school year, and because of her tutur, I'm betting there was little to no regression as he classes get underway.

So, I am excited for both kids to get back into the regular school year, and I know they are both looking forward to seeing their teachers and other staff at the school. We have indeed survived another summer, and each summer gives me new insight as to what I can do to make sure both Ronnie and Ashley have the support and services they need.

Thursday, August 21, 2014

ASL Happy

For my son, Ronnie...

Wednesday, August 20, 2014

Don't Look Down On Me

While this video is directed at one specific disability, the wisdom of Mr. Novick can be extended to all types of disability.

Thursday, July 31, 2014

Wednesday, July 30, 2014

Aren't You Sorry You Asked?

It's been a rough summer. You could probably tell that based on the lack of posts to this blog. So, here's a quick summary, and a promise to try to start doing better...

Ashley's ESY/summer school ends tomorrow. The best thing about summer school this year? The bus driver. Other than that, I have no idea who Ashley's teacher was, whether or not she had the 1-on-1 signing aide she was supposed to have, what she did, whether she ate lunch, whether she got her medicine every day, etc. etc. There was no contact with a teacher for the entire session, and no progress notes sent home. Needless to say, this will be Ashley's last year attending summer school.

Ashley also started a day support program. She would attend for a few hours in the afternoon Monday through Thursday (summer school days) and all day on Friday. There have been the usual bumps along the way, but Ashley does seem to enjoy her time there. I believe it is a promising place for her to spend next summer.

Ronnie became bored two days after the school year ended and summer began. Chip tries very, very hard to keep Ronnie busy and occupied, but Ronnie isn't holding up his end of the deal. When Chip plans an outing, Ronnie will complain and say he wants to stay home. When they stay home, Ronnie will complain about being bored. This does not bode well for the time after Ronnie graduates from high school. He really needs to take some responsibility for his life and show some motivation, but so far that is not happening. For the moment, I am writing it off as teenaged angst, but I can't do that much longer.

And my health hasn't been good all summer. I don't know exactly where the problem exists, but my rheumatologist can't seem to get my medicines straight. It could be a problem with the pharmacy (it is a specialty pharmacy, you know, those ones where they charge even more outrageous amounts for meds) or with my insurance, but I don't know. If I knew, I could go to battle, but so far no one is sharing any information with me. As a result, my joints are screaming in pain and I am dealing with extreme fatigue. Throw into that mix my job and its accompanying off-the-chart stress level, and all I want to do is sleep.

So those are all my excuses for a rotten summer and the reason I haven't written. Hopefully my next post will be a little more positive...

Tuesday, June 24, 2014

Wednesday, June 18, 2014

Wednesday, June 11, 2014

The First of Many Transitions

There are only two more days of school left, and I am sad.  I bet that's not something you hear often from parents of children with special needs.  But for this family, and especially for Ashley, it is so true.

Although the elementary and middle school years were very rough for Ashley, high school has been wonderful.  I've written many times about what a positive experience high school has been due to a teacher that 'gets it', a staff that truly cares about educating ALL children, and people who see the whole child, not just the disability.

Ashley thrives in the consistency and routine provided by the school.  She is comfortable there, and that means she can soak up all the education which she is being provided.  The growth she has experienced in high school has been phenomenal.  But summer is a different story.

Ashley does participate in ESY services during the summer.  But, the services only last for 5 weeks, and then only for a small portion of the day/week.  There is no time to build the routine Ashley needs to feel comfortable.  The staff is different - the peers are different - the bus drivers are different - the schedule is different - and the  location is different.  All that different does not spell success for Ashley.

Also, in the past, when Ashley was not in summer school, she was home with an aide, or counselor, as the agency I use refers to the people they hire.  If they truly were counselors, and if they truly did the things that were written in our agreement with the agency, summer would probably be a better experience.  But the only things previous counselors have helped Ashley with over the summer is perfecting her laziness skills.

So, this year I am trying something different.  Ashley will be attending a day support program along with summer school.  Although there will be a lot of different there also, I'm hoping that over the entire summer, Ashley can build some relationships with staff and peers, and can get comfortable in the setting.  If so, the day support program will be where she transitions to once she can no longer attend school (3 more years).  And just to have an extra pair of eyes on Ashley at the day support program, I have contracted with Ashley's current vision teacher to provide a couple of hours of tutoring each week.

I am very nervous about next Monday and her first day at the day support program.  But, I need to try very hard to not left Ashley feel that nervousness.  I know that I have as difficult a time with change, perhaps even more difficult, as Ashley does.  We would both be very grateful if you would keep us, and most especially Ashley, in your thoughts and prayers as the summer progresses...

Thursday, June 5, 2014

A Room With A View

The birds in my neighborhood are in quite an amorous mood this Spring.  They have built double the number of nests as in previous years, and because of that, they are running out of birdhouses!  We have seven houses and there is no more room at the inn.  So what's a momma bird to do?  This....


Friday, May 30, 2014

More Than Functional Skills - Part 2

In part 1 of this discussion, I asked the question:

Do you believe that nurturing creativity from a very young age might serve as a foundation for a future life goal, perhaps even employment?

This...this is why I asked that question...



Wednesday, May 28, 2014

More Than Functional Skills

I believe that one of the most important things about our child's development and education is left out in most special education programs - fostering their creativity.  So much time is spent on functional and life skills and almost no time is spent on encouraging our children with disabilities to dream, create, and invent.

Sure, when they are small, classrooms often include markers, paper, glue and glitter, but in my experience with my children with disabilities, the little ones receive a lot of *help* so their creations look good, or at least look the way the staff thinks we want to see our children's artwork.  I saved almost none of the art projects that came home looking decidely different than I knew my children would have done.

Then by the time middle school and high school roll around, art class is viewed as an *extra*, something to fill an hour or so if there are not life skills classes to be found.  When my children were offered art class in these school years, they were pretty much situated at a table and handed markers and paper.  Even though they were more than capable of following an art lesson, they were usually labeled as incapable and the staff was able to pat themselves on the back for *including* the children.

But I refuse to accept that.  Reaching into the creative parts of our brains, I believe, helps the other parts to grow.  Once our children with disabilities are allowed to explore their creativity, they learn to explore other aspects of their lives, and ultimately build upon their self-advocacy skills.

Ashley, for example, has participated several times in her school's PTA Reflections contest.  Did her work look like or sound like that of non-disabled students of the same age?  Not usually, but what she did create was beautiful in its own way, the same of which could be said for her.  She learned to try, to feel, to test, to combine things in a way her mind deemed *right*.  She learned to relax through the therapy art can provide, and she learned to define what beautiful meant to her.

But those lessons came at home, not in the classroom.

What about you and your children?  What things have they experienced that drive their creativity?  What things have you done to encourage their exploration?  Do you feel it is important to nurture their creative side even if it means less time might be spent on learning to do laundry or cook or make the bed?  Do you believe that nurturing creativity from a very young age might serve as a foundation for a future life goal, perhaps even employment?

Is creativity an important quality in any person, even people with severe disabilities?  I believe it is, but I'm very interested in your opinion....

Everyone Needs A Geek

So what do you do when your cable TV service goes out on the night when the finale of the show you have been watching and obsessed about all season?  Well, if you are lucky like me, you call your resident geek (Chip) who with his special powers connects some cable on the TV to the metal star sitting on your dresser using only packing tape, turns the start just so, and voila!, the only channel that comes through is the one you needed!!

Wednesday, May 21, 2014

Special Exposure Wednesday

Checking out the Micky Mouse Chia pet!

Tuesday, May 20, 2014

Make No Assumptions

Just because you spend many hours trying to educate your children on Internet safety, don't assume they practice it.

Just because our school systems have classes, assignments, and lectures on the subject of Internet safety, don't assume your children are receiving the message.

And in case you think you have enough parental controls on your computer to keep your children from doing something they shouldn't, more than likely you don't.

My son, Ronnie, loves Facebook and its associated apps (instagram, oovoo, etc.).  Because he uses sign language and most of his friends don't, being able to type messages and shares pictures over his computer apps seems like a perfect match made in technology heaven.  However, it's not just his friends who are using those apps, and not just his friends that are communicating or at least trying to communicate with him.

Last week, a young lady (at least the picture on Facebook was of a young lady) attempted to engage Ronnie in conversation.  That's a pretty easy thing to do since Ronnie is very social, especially when it comes to attractive young ladies.  The conversation seemed innocent at first, but soon turned to the young lady asking Ronnie if he would like to see her on her webcam.  He was thrilled, and of course said yes.  She said that she needed him to charge something on his credit card before she could do that, and his teenaged brain agreed. 

Problem is, he doesn't have a credit card, only a debit card.  But not to be thwarted, he took a picture of his debit card and posted it on Facebook for the young lady to see.  You can probably guess where things went from there.

Fast forward to the next day, and Ronnie and Chip tried to see a movie.  It had already been agreed that Ronnie would pay for the movie, but when he presented his debit card, it was declined.  About that same time, I received a phone call from the bank's fraud department asking to speak to Ronnie.  It took another day for the fraud department, Ronnie, and the sign language relay operator to connect, and what he found out was that the young lady tried 9 times to charge something on his debit card.

Fortunately the fraud department stopped the transactions, and Ronnie didn't lose any money, but this could have been disastrous. 

I had been randomly checking Ronnie's Facebook account - it's a requirement that my children share their passwords with me - but I need to do it more often.  We also had some more training on Internet safety, but I still wonder if such a situation happened again, would Ronnie's teenage brain rule over his training and common sense.  I'm afraid I know the answer...

Tuesday, May 13, 2014

First Deafblind Graduate of Harvard Law School

Haben Girma is the first deafblind graduate of Harvard Law School. She applies her unique perspective as a Skadden Fellowship Attorney at Disability Rights Advocates to remove access barriers for students with disabilities. The White House has recognized Haben as a Champion of Change.

Monday, May 12, 2014

Disability of Choice?

The Autism community has done a bang up job of getting their message heard.  There are so many organizations, some good, some not so good, but all of which have the ears of some very important people.  The results are, to name a few:
  • Specialized schools and classes in regular schools
  • Quite a bit of spending on research and teaching methods
  • Whole industries popping up that offer support tools and products for educators and parents alike
  • State governing bodies listening and changing laws
  • State and Federal education departments which have built entire bureaucratic structures to support the Autism community.
Now I wish the Autism community, parents and professionals alike, would share their strategies, share those things which gets the notice and gets the dollars.  So many other disabilities, and yes, the numbers may be fewer, could use some of that notice and money.  It seems sometimes like the disability to have is Autism, not Down Syndrome, not Learning Disabilities, not Deafness or Blindness, and not Physical Disabilities.  If you want the school systems to pay attention to you, it seems it would be better to have Autism than to be deaf or blind.

I know this may sound a little bitter, and perhaps it is.  But after a total of over 20 years of having children with disabilities in our school systems, and none of those having a child with Autism, it gets a little frustrating watching new technologies, new teacher trainings, articles in the press, etc. all the while children with other disabilities often seem to be lumped together and the I in IEP forgotten.

I'm sure this post may upset some, but that really is not my intent.  I am just trying to understand how children with any disability can receive the services they need.

Thursday, May 8, 2014

Throw Back Thursday

When my babies were babies...
(They are now 19 and 23 years old!)
 
 
 

Wednesday, May 7, 2014

My Star Athlete

Check out this video that my son, Ronnie made for the Sportable Annual Report. Then go check out the whole report. You will be amazed at the great things this organization is doing for athletes with disabilities!

Ronald Nickerson Interview from Mediapond on Vimeo.

Friday, May 2, 2014

One Child Assaulted, One Child Murdered

Some of my fondest memories of childhood are of exploring my neighborhood with my friends, playing in the swampy area behind our houses, riding our bikes until darkness rolled through the streets....but children today can't build those memories.

Their parents must keep them in sight at all times.  The children sense their parents' fear and become fearful themselves.  And then, if just for a moment children shed the fear and become their happy, carefree selves, something like this might happen, and it, and other horrible things, are happening more frequently.

We need to take back our neighborhoods.  We need to let our children enjoy their childhoods without fear.  We need to end this senseless violence...


Wednesday, April 30, 2014

Hunger in Suburbia

When I attended Ashley's ESY meeting last week, I learned something interesting.

No, it wasn't that ESY services will look pretty much the same for all students - the I in IEP apparently still doesn't mean anything after the 17 years Ashley has been receiving school services.  No, it's not that ESY services will be shorter this year - I've come to expect that.

What I learned was that 43% of the students in Ashley's school are on the free breakfast and free lunch program.  43%!  That's approaching half the student body.  One of the school staff also shared the fact that many of those 43% have families that often go hungry - even some with two parents who both have a job.  And with summer approaching, the number of children without adequate food will increase dramatically.

How could I not have known that?  And now that I do know, what can I do?

The area which assigns students to Ashley's school is a middle class suburb.  Residents have middle class white collar jobs or middle class blue collar jobs - or so I thought. Most of the houses in the area are older (1960's), brick homes, most with well-kept yards or apartment buildings, most of which rent for $900+ a month.  The area is very diverse racially, ethnically and culturally.  And crime, though there is some, is not violent or frequent. All these things seems to have lulled me into not even thinking that people could be going hungry, especially children.

However, eve with
that profile, children and their families are going hungry.  What can we do?

I know there are food banks and churches that offer meals and food.  But I think this problem needs a more focused and targeted solution.  I believe our neighborhoods and schools should be full of people helping each other.  And that's why I ask "What can we do?"

Seriously, what can we do??

Friday, April 25, 2014

The Other Side of The Door


You may have noticed that I haven’t been posting much recently.  Last week, I used the excuse that it was Spring Break, but this week, I have no such excuse.

I’m not sure exactly why I’m not posting.  Writer’s block?  Nothing important to say?  Too much other stuff going on in my life?  I’ve pondered that question for a couple of weeks now, and I do think I have an answer.

I seem to be facing a new door into my future life.  My children are not young anymore, and as such, I don’t have many school horror stories to share.  Their health has been relatively stable, so there’s not much on that front either.  There will always be stories about disability or accessibility nightmares we face, but I wonder if you may be tired of me sharing those.

What I do know is that the future on the other side of the door is going to look very different from our current life.  I will be facing the challenge of appropriate adult services for my children, and they will be facing something so vastly different than they have ever experienced.  People and friends are likely to be different.  Expectations will be different.  Locations and activities will be different.  And, the thing which frightens me the most – I will need to shore up plans for my children’s care in the event I am unable to continue to provide that.

I’ve overwhelmed with the newness and the unknown.  I’m exhausted from a work schedule which seems to grow more hectic each week.  I’m battling my own health issues as my lupus and rheumatoid arthritis are growing worse and my medication is helping less.

I don’t know that I need a break, but I do know that I need to ‘lighten the load’ a bit.  I need time to bring the future into focus, time to decide how to approach the challenges, time to even understand what most of the challenges will be.

I’m not going to stop blogging altogether, but I am going to slow down a bit.  Maybe when my life feels more together, I can get back to my 5-day-a-week schedule, but for now, I am going to write when I feel moved to do so.  That may be once a week or once every two weeks or maybe even three days in a row.  Hopefully my writing, whatever its schedule may be, will do as it has in the past – help me to center myself, support my children, take comfort in the wisdom of my readers, and assist me with finding the best route through this next phase in my life and my children’s lives.

I have been and always will be so very grateful to you, my dear readers.  I hope you won’t give up on me.  I hope we can stay virtual friends into the future.  I need you, and I hope in some very small way, you need me also.

Here’s to the future – a time of excitement and embracing the differences!

Thursday, April 24, 2014

Monday, April 21, 2014

The Bravest Thing Ever

During Spring Break, we visited one of our favorite places - the Virginia Safari Park.  Located near Natural Bridge, Virginia, The Virginia Safari Park is a magical place where animals such as zebras, deer, antelope, camels and bison come right up to your car for a snack! 

In addition to the drive-thru portion of the park is a small walk-thru area where super turtles, monkees, lazy kangaroos, giraffes, peacocks and budgies greet the public. 


Since Ashley is severely visually impaired, she doesn't always get to see the animals, but the budgie house is a different story!  Fashioned like a gigantic bird house. hundreds of budgies fly around.  They will land on shoulders, fingers and even hats.


As you might imagine, the hubbub in the budgie house could go one of two ways - she could be frightened and over-stimulated, scaring the other visitors as well as the birds - or the way life unfolded during our visit!  For a blind child, this is quite possibly the bravest thing I have ever seen!







Monday, April 14, 2014

Spring Breaking

It's Spring Break for the kids.  It's also time for flower planting, zoo visiting, ice cream eating, napping, and all those other wonderful things we can do when we don't have school and work!

I hope you all have a wonderful Easter, and I will see you on the other side!


Wednesday, April 9, 2014

Special Exposure Wednesday

No, it wasn't a tornado or hurricane...it's my old, rotting shed during its teardown process...otherwise known as "the source for dead rodents to the delight of my two dogs"!
 
 
 
 

Tuesday, April 8, 2014

Ouch!


I wake up every morning with hands so swollen that they can hardly bend.  They ache, as do my elbows, shoulders, and knees.  Every so often, my hips and feet jump in to enjoy the pain too.  I have rheumatoid arthritis.

I was diagnosed about 10 years ago, and have been through a whole range of treatments – Ibuprofen, prednisone, methotrexate, and several biologics.  The biologics have traditionally been the best, but they usually only work for about two years.  And that’s why right now I am trying yet another, my 4th, biologic.

I began four weeks ago on Orencia.  Unlike the other biologics I have tried that are once a month shots, Orencia is a once a week shot.  Usually when I started on one of the other biologics, I would get relief pretty quickly, but so far on Orencia, I feel worse not better.  I’m not sure what that means, but am really looking forward to my next rheumatology visit in a couple of weeks.

It also seems that Orencia comes with its own unique set of side effects – flushing, back and shoulder pain, and a monster headache that I just can’t seem to shake.  I had no side effects on the other biologics, so I don’t know what makes Orencia so different.

I would love to know if any of you have tried these meds, or have RA (or a similar condition requiring the use of biologics).  What’s worked for you, and what hasn’t.  I’m not young, but I’m also not old enough to feel as bad as I am right now…

Monday, April 7, 2014

Competitor - Winner!

Ronnie competed in the Mid-Atlantic wheelchair games this weekend.  He even came in 1st in his age group in the 100, 200, 400 and 800 meter races!  Way to go, Ronnie!



Friday, April 4, 2014

My Day Begins...

It's 4am.

Time to get up. Get myself showered, hair dried, make up on.

Feed the dogs - one at a time - outside because they are such pigs

Prepare Ashley's morning meds.

It's 5:30 am

Time to wake up Princess Ashley after corraling the dogs back into the house (which recently has involved wiping their muddy feet with a towel).

Pick up the detritus from her night-time partying.

Help her tend to her personal needs. Administer medications, and help her get dressed in the first outfit of the morning.

Make her bed with her help (?).



It's 6am

Start a load of laundry

Rinse out all the medication syringes.

Assist Ashley with her morning yogurt.  Make her two pieces of toast, cut in triangles, crust removed.

Assist her with eating her toast.

Help her to the living room couch where she will take a morning nap while waiting on the school bus.

It's 6:30am

Put away the laundry done the night before.

Pick out three outfits for Ashley for the next day - two for home in the morning, one to go to school.

Vacuum the mud, leaves, etc. brought into the house the previous day by boys and dogs.

Write any notes needed for school.

Pack Ashley's lunch and backpack for school.

It's 6:45 am

Begin a supplemental tube feeding for Ashley, spill some on her clothes (now you understand why we need two outfits for the morning), clean it up and clean feeding supplies.

Make fruit/veggie smoothies for the boys.  Make breakfast for the boys.  Oh wait, make some breakfast for myself too.

It's 7am

Wake boys up.

Nag Ronnie for being so slow.

Take out trash and recycling.

Pack my bags for work, including shutting down my computer and loading everything in my car.

Figure out what I will wear to work the next day and set it out to be pressed in the evening.

Move laundry to dryer.

It's 7:30am

Wake the princess up from her morning nap, and help her tend to her personal needs.

Locate the objects of her desire to be used while waiting for the bus - some days it's blocks, some days it's starry wires, some days I never figure it out.

Set the living room couch and the rest of the room to a reasonable state of neatness (I hate coming home after work to a messy house!).

Continue to nag Ronnie to move a little faster.

It's 8am

Wait by the front door for the school bus which sometimes come at 8:10, sometimes 8:20, and sometimes 8:30.

Put my darlings on the school bus and head to work.

It's 8:45

Begin (?) my work day

Thursday, April 3, 2014

Spring Has Sprung

And this sums up exactly how I feel!!!


Wednesday, April 2, 2014

Special Exposure Wednesday

My peach tree is coming back to life....

Tuesday, April 1, 2014

Blenderized

I need some help from other parents who tube feed a blenderized diet to their child.

Ashley, though she takes most of her food by mouth, needs some supplemental tube feedings to make sure she is getting enough fluids, fruits and vegetables.  The problem is I don't know which fruits and vegetables to use to make sure she is getting as much nutritional value as possible and as much fiber as possible all the while holding the calories down.

I also don't know if it is better to use fresh fruits and veggies, cook them down, and then blenderize them versus using canned vegetables and fruits.  How much water should I add to the mixtures, and/or do I need to also push water before/after the feeding?  And, are there any fresh vegetables that can be added as-is, e.g. spinach.

I've found some information on sites like Facebook, but most of the information is for children who are exclusively tube fed.  Ashley only receives supplemental feedings.

We are going to meet with a nutritionist (ordered by the endocrinologist at a recent appointment), but the first appointment we could get was not until June.  I just don't want to wait until then.  So, I would love any information you could share.

Monday, March 31, 2014

Shoes, Racing, Games and Cake!

I was quite an exciting weekend in the Nickerson household!

Ronnie competed in the Monument Avenue 10k race, and came in 2nd in the wheelchair division.  His picture was even in the paper!

 

Saturday was Ashley's 19th birthday.  I still can't believe I am writing that number!  Take that all you doctors who never believed she would make it past her 2nd birthday...

Ashley is a master of dragging her birthday celebration out for several days.  First, after school and a visit to the doctor, we went to the Mall and she tried on shoes (more Converse, of course!).  On Saturday, we celebrated with a trip to Dave and Busters, and that was followed by her cake.  She was mesmerized by the candles and loved loved loved the icing flowers!

Then Sunday, she asked for pizza for her birthday, which of course she got, and that was followed by more cake.  It was a great weekend for all of us!


 
 








 






Friday, March 28, 2014

No Easy Answers

Ashley is a very medically complicated person.  She has deafblindness, epilepsy, brain tumors, ADHD, feeding issues....and after our visit with the endocrinologist yesterday, suspected hypothyroidism.

Hypothyroidism in and of itself is not difficult to treat.  I know because I was diagnosed with it over twenty years ago as a result of Graves Disease.  I take a daily pill of synthetic thyroid hormone, and as long as the dosage is calculated correctly, all is good.  However, the doctor suspects Ashley's thyroid issue is a result of the seizure medication she takes.  The synthetic hormone may or may not work in her case, and may or may not cause other issues.  And, she must continue to take the seizure medications.  As usual, there are no easy answers when it comes to Ashley's medical treatment.

The endocrinilogist has ordered some additional blood work, and until I let him know for the third time that Ashley was adopted, he had also ordered some genetic testing.  Also, since hypothyroidism results in weight gain (the reason that brought us to the clinic in the first place), the doctor also wants us to consult with a nutitionist, the first appointment for whom was not available until June.

I've wanted to meet with a nutritionist for  a while now, but it does scare me a bit.  Ashley has a very narrow range of foods she will eat by mouth.  Until she graduated from our children's hospital feeding program, she was completely tube fed, but for the last 10 years or so, she has survived on that narrow range of food with supplemental tube feedings of blenderized fruits and vegetables.  What scares me is that the nutritionist may suggest more tube feedings.  Ashley has worked so hard to eat by mouth and I really don't want to regress on that.  But, for her health, we do need to keep her weight gain in check.

So yet again, there are no easy answers.  But I guess that is what makes my beautiful, special girl so unique!  This weekend we will be celebrating her 19th birthday.  At age two, her doctors predicted she wouldn't live to see age 5.  So, I'll take the complications because they sure seem
to be working so far!

(p.s.  that is NOT Ashley's tummy pictured above - it is just a picture of a g-tube site)

Wednesday, March 26, 2014

Special Exposure Wednesday

Just 3 more days until Ronnie competes in his first road race.  The Monument Avenue 10k is this coming Saturday, and Ronnie has been training hard.  I don't think he will have any problem at all!

Tuesday, March 25, 2014

Purely and Simply, A Work of Art


Each year, SPARC - the School for The Performing Arts in the Richmond Community sponsors Live Art.  Live Art is a groundbreaking, inclusive arts education program for students of all abilities (with and without disabilities), culminating with a major public concert featuring these students and prominent headlining musicians. Students involved in the program participate in a series of cross-pollenated arts classes that include training in dance, singing, visual art, American Sign Language, mime work, playing musical instruments, visual technologies, spoken word and more. All of the classes combine two or more art forms within a new and unique curriculum that ensures all students will experience a challenging and rewarding semester of classes. The culminating event of this program is a life-changing performance in one of Richmond's largest and most prominent theaters, the Altria Theater. During this performance, world-renowned musicians join the students in a major music concert during which the students perform acts of live art.

Watch this video about Live Art - you will be very glad that you did!

Monday, March 24, 2014

A Mom Asks For Advice

A mom to a preschool-aged child with disabilities has asked me to poll you, dear readers, for some advice.  I have never met either the mom or the child, so the descriptions below are shared from the words of the mom and the child's nurse.  If you have any advice or suggestions, they would both be most grateful!

The child, a little girl who is preschool aged and does not have a definitive diagnosis, is non-verbal, developmentally delayed, uses a few signs she made up herself, and with the help of school staff, is being encouraged to use a PECS system.  The child has a g-tube and is fed almost exclusively through it.  The mom and nurse will encourage the girl to eat by mouth, but the results have been disappointing so far.

The girl is used to having her every need met, even before she realizes she has the need.  Her mom describes her as having no patience whatsoever.  The child doesn't play with toys much, but rather spends a great deal of time in front of her favorite TV show.  When not watching TV, she likes her nurse to sing her favorite 5 nursery rhyme songs over and over and over...

Going out in public is very difficult for the child, the mom and the nurse.  Even a trip to the doctor's office results in a major meltdown if there is any wait time involved at all.  Shopping trips are the same, and eating out in restaurants is impossible.

The nurse and the mom feel enslaved by the child, and want desperately to expand the child's horizons.  But they don't know how.  When they have brought the issue up with the pediatrician, they tell me the pediatrician says to just force the child to go out more and eventually she will get used to it.  But the mom and nurse don't like that approach.

So, they are both asking for advice...and that is where you come in.  We all have so many years of experience with our own children, and both are hopeful we can draw on that experience to help them.  They said to tell you thanks in advance!

Thursday, March 20, 2014

Systems Unchanged


Soon after I adopted Ashley 17 years ago and began my journey into the world of special needs, I decided to work as hard as I could to make things better for her and other children with disabilities.  I served on advisory councils for organizations supporting children with special needs – I was on steering committees whose goal was to make the educational experience better for those children – and I presented on the subject to anyone who asked me to.  The main theme I heard from all the experts in the field was ‘systems change.’

To make things better for children with disabilities, we needed to affect ‘systems change’ – change in our educational institutions, change for medical professionals, and change for all the other people who provided support to our special children. 

I bought into that concept for many years – thus the reason I always agreed to serve on those advisory councils and steering committees.  I truly wanted systems to change – I wanted my daughter and others like her to get the education to which they had a right – I wanted doctors and nurses and therapists to understand my family’s challenges and adjust their thinking on support – I wanted any ‘system’ with whom my child had contact to respect her, challenge her, and believe in her.

Sadly, those 17 years have passed and I haven’t noticed or experienced any significant systems change.

But that doesn’t mean that everything has been bad for Ashley.  Yes, the elementary and middle school years were bad, but high school has been wonderful.  Since I haven’t really seen any systems change (my school district is back to sending all the deaf children to the same school, all the children with autism to the same classrooms, etc.), I wanted to figure out why things have been good for Ashley in high school.  And I think I have.

We haven’t affected any changes in our systems as a whole, but what we have done is touch the hearts of some of our teachers, and in the process affected positive change in that way.  What has made the high school years great for Ashley and for my son, Ronnie, is that they have teachers who believe in them, teachers who want them to succeed, and teachers who are willing to go that extra mile to understand their unique learning needs.

I no longer serve on the advisory councils and steering committees.  I have very few conversations with the ‘systems’ and organizations that support my children and other children with disabilities.  What I do have in open, honest conversation with my child’s teachers.  As a result, the teachers also do not see a ‘system’ of children in their classroom – they see individuals with unique qualities – individuals that need to be taught in individual ways.  They see Ashley…and Ronnie….and all the other children in their classrooms and they are committed to doing the best job possible for those students.

That, dear readers, is positive change, change that will make a wonderful difference for my children and the children that come after them.   While I want my children to be seen as individuals, I believe teachers also want to be seen as individuals, not lumped into systems which may be flawed, but unique individuals who want what is best for their students.  Those teachers will be the ones who lead our systems forward, and I am so very grateful to have met some of them!


Wednesday, March 19, 2014

Tuesday, March 18, 2014

No More Snow!

We have officially run out of things to do on snow days.  There have been so many this year that I believe my children are actually looking forward to school.  Yesterday's example of a mindless snow day activity involved superimposing Ronnie's face and the face of his friend, Raheim, on Iron Man and the Hulk.  Spring, please please hurry up and get here....