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.

ASL Happy

For my son, Ronnie...

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.

Yet Another Loss This Week...

Mary MacCracken, Writer About Disabilities, Dies at 88

Summer Pleasures

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...

Finally Fit

Now this is using your brain for good...

Toronto Exhibit Highlights Fashion for People Using Wheelchairs

Yes!

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...

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....

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...

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!!

Special Exposure Wednesday

Checking out the Micky Mouse Chia pet!

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...

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.

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.

Throw Back Thursday

When my babies were babies...

(They are now 19 and 23 years old!)

 

 

 

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.

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...