Sunday, April 28, 2013

Filling in the gaps

I know full well that most school employees are kind-hearted and are truly in their professions to help children reach their full potential in a safe environment.  Truly.  But everything is not all hunky-dory in the world of special education, and that includes for students/families impacted by ASDs.  Though forward progress has been made, it hasn't been a smooth ride, and we aren't yet where we need to be.  Our superintendent wrote a letter to the editor (The Enterprise, 4/24/13).  In my opinion, each of the points in his letter may be accurate, but when you string them together, you hide the gaps. What's in between the points are the problems with services.  I've pasted in the original letter and filled in some of the gaps I noticed. 

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The St. Mary’s County public school system recognizes that April is Autism Awareness Month. While April 2 has been designated as World Autism Awareness Day, the entire month of April is a time to focus on autism spectrum disorders. According to Autism Speaks, a worldwide organization that promotes research and awareness, autism affects 1 in 88 children and 1 in 54 boys.

St. Mary’s County public schools are fully committed to supporting students, families and staff with the goal of improving the outcomes and lives of children and young adults with autism
How do you measure that commitment?  I see that students are denied the educational label of autism (often even with a medical diagnosis in hand) and therefore are denied many of the services they need to succeed.  I see that parents may be treated with disrespect, disdain, occasionally contempt.  I see that students' IEPs are NOT automatically fully implemented as evidenced by the number of parents who have to FIGHT to make implementation happen.  I see that knowledge at the central office level cannot be counted on to make it to the teachers "in the trenches."  I see that teachers in the trenches have  needs that aren't met by central office.  I see that families are denied communication and information essential to being an equal member of their child's team.
Currently there are 160 students with a disability of autism in St. Mary’s County public schools.
Maybe 160 is the number of students with the educational label of autism.  But I hear parent after parent tell me that their child was denied the educational label, often the IEP itself, in favor of a handful of accommodations in a 504 Plan (which does NOT fall under the Department of Special Education).  Additionally, how many other SMCPS students have autism but fall under another educational label and thus aren't included in the category?  I can think of several such children in my circle of friends.
The St. Mary’s County Public Schools Department of Special Education has established and expanded a comprehensive framework of supports within the public schools. The autism support team consists of a supervisor of special education, an instructional resource teacher for autism spectrum disorders, and two full-time, board-certified behavior analysts.  All members of the team hold advanced, post-graduate certifications in the areas of autism and behavior.
But we lost an Autism IRT.  And the supervisor spends a lot of time telling us our children don't need x, y, or z.
This team is responsible for establishing and implementing programs within the framework of support. 
In my experience, this team is responsible for saying, "We don't do it that way." or "We can't afford it." or "S/he can have it if it's already AVAILABLE." or "There isn't time in the day to address x need."
All supports use evidence-based practices and applied behavior analysis.
No, no they don't.  It feels like supports use evidence-based practices and applied behavior analysis when it's convenient.
In addition to the autism support team, students and families are supported each and every day by teachers, therapists, psychologists, administrators, instructional assistants and other instructional support staff within the schools.
OK, I can agree with the statement, mostly, for students.  I just can't say the same for families.
Under the supervision and support of the autism support team, a cadre of trained applied behavior analysis providers, works daily with students in school and home settings to further implement applied behavior analysis strategies. 
This is the second time I've heard that SMCPS has a plethora of ABA techs (the other time in the 4/10/13 article in the Enterprise).  That's really good to know because so very many of the parents I know are not told about ABA.  Some parents are told that ALL team members are trained in ABA and therefore ABA techs are not needed, yet proven successful ABA techniques are NOT being used by "ABA-trained" team members.  And then there's the "in home settings" piece:  Really?????  I've heard that students are owed hours of in-home ABA services.
Specialized classes have been established for students at the elementary, middle and high school levels to meet complex student needs.
Yes.  Some complex student needs are met this way.  Others aren't, nor are they met any other way.  (Twice exceptional students make up one such group.)
According to the Behavior Analyst Certification Board, applied behavior analysis is an applied science in which professionals in applied behavior analysis engage in the specific and comprehensive use of principles of learning, in order to address behavioral needs of widely varying individuals in diverse settings. These principles are applied in school and home settings to teach new skills, to improve social interactions and to help children become independent and successful.
I've heard that some students have ABA services in the home.  Some.  Not all who need.  Just some.  And some of the time.
Families have available to them a comprehensive system of assessment and evaluation by a highly qualified team of experts within SMCPS. Children are assessed with the most up-to-date procedures and tools and within multiple settings. This critical information is shared with families as part of the special education process.
If a parent knows what tests to ask for, because not all relevant tests will be administered automatically.  And it takes FOREVER.  Yes, there are legal time   constraints, but how many of us have had the process d-r-a-w  o-u-t until most of the year is gone?  And recently, parts of assessments have stopped showing up in reports.
Parent and staff training are critical to the success of all students. 
Duh.  Much is touted; it's not enough.
The Department of Special Education maintains a list of resources and interactive tools through the Department of Special Education webpage. 
Sounds great, but I've never heard them referenced from staff, and a link on the SMCPS webpage > Our Offices > Division of Instruction > Department of Special Education > [sidebar link] Autism School and Community Tool Kit is not useful if not used.  The actual website reached is Autism Speaks School Community Toolkit, which embeds more links and downloads and which clearly states, "This tool kit is not intended to be a curriculum for special education for students on the autism spectrum, but rather a support for the general education and administrative school staff who interact with students with autism in various capacities."   So it's not intended for parents except for them to fill in the 1-page "About Me" form and then figure out how to get the school to use the resource because I have NEVER once heard a parent say that school is using it for their child.  Never.
Professional development is ongoing in our schools. Staff meets with specialists to plan for instruction, to train in specific skills, to raise awareness, to assist with behavior and to model teaching techniques. 
Yet how many staff members are still clamoring for training, training, training?  I hear them.
Autism support team members meet with families to help them carry over the success in school and to help their children with independence and challenges in the home and community.
Rarely.  Rarely.  Rarely.
Teachers, parents, and community members can create an account through the AIM site and complete research-based  modules that cover all areas of instruction and support related to autism.
Never heard of it.  Don't know what it is.  Can't comment.
Families can learn about community supports such as the Maryland Autism Waiver and the DoD Tricare Support model. 
From whom?  Where?  Not searchable on smcps.org
There is a school and community toolkit that can be accessed through the Autism Speaks site.
That's the same one discussed above, nothing new.
Most recently, the Department of Special Education has made available to staff and families the tools in Autism Pro, a web-based program 
A colossally expensive and useless program that is NOT utilized.
and partners with the Partners for Success and the Citizen’s Advisory Committee for Special Education to provide informational workshops in the evenings.
For "partners," read, "obstructs" and "uses them to show that they have such entities but doesn't use them for their full purposes or says that they have but haven't."
St. Mary’s County public schools want the community to know that a child who may have an autism spectrum disorder is first and foremost an individual and unique child. Our staff works each and every day to nurture the individual child and to help their families and schools do the same.

Michael J. Martirano, Leonardtown 
Sounds sweet, but I'll say again that there is no area of my child's life left unaffected by autism -- that's why it's called pervasive.  To think of him without autism is to lose that which makes him unique.
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I wrote the above, even posted it as a comment to the link on Facebook, and I went to bed.  When I woke up, I felt the need to clarify: 

I want to be clear that I'm not trying to paint the school system as evil or the existing interventions as across-the-board ineffective. I think that there are good people trying very hard to help our children reach their potential.  Sometimes that's all it takes. Other times, more is necessary.  

This is particularly true of TRAINING. Our children have to be understood as people with autism. How can you teach them if you can't reach them?

It's also true for "available" TOOLS/PROGRAMS. I have a treadmill, but it doesn't help me get in shape if I don't use it. Saying that we have Autism Pro is just words until the tool is used. Slapping a link on the DSE's page is useless if word isn't spread or if the linked site isn't appropriate/isn't used.

Additionally, PATHWAYS must be cleared and obstacles removed. Parents must be valued, not poo-pooed. Educators who have innovative ideas must be encouraged, not shut down. Statements of problems must be addressed, not white-washed or interpreted as personal/professional attacks and treated unprofessionally.

I've said before that I've seen forward progress in the 12 years we've been "in the system." I'm grateful to all the educators who are making a difference. However, we have not reached the point or place that we can say that SMCPS systemically addresses the needs of students and families impacted by autism. I don't think we can say that until it stops being a fight to get our children the services they need.


Monday, April 22, 2013

To ask or not to ask...

I'm really struggling with fundraising.  This past month, it has become a major part of my life in multiple areas.

You may remember that I coordinate the Autism Spectrum Support Group of Southern Maryland.  We have been supported over the years by the Learning Disabilities Association of St. Mary's County, a United Way Agency.  When we come into a little money of our own, we "bank" it with the LDA-SMC so that everything is on the up-and-up.  And if we need something that we can't afford, the LDA-SMC helps out.

Unfortunately, overall giving to the United Way is way down.  Scary way down.  Therefore, the funding that the LDA-SMC receives from the UW is just as scary way down, and that directly impacts local families.  For example, last year, the LDA-SMC and the Autism Spectrum Support Group were able to provide "camperships" for local families; this year, the LDA can offer only a few, and the Support Group none at all.  Additionally, the upcoming executive functioning workshop (May 11th at the Southern Maryland Higher Education Center, registration at www.latelostunprepared.eventbrite.com) will have a fee -- something that rarely happens when the LDA-SMC sponsors a workshop -- just to break even.

Because the United Way wants its members to do more fundraising -- to be truthful, the LDA-SMC and the Autism Support Group have done little to date -- we've been racking our brains (Did I mention I'm an LDA-SMC board member?) to come up with ideas.  The most immediate one we could think of is raffles at the EF workshop:  a basket of books for teachers and another for parents.  Plus we cleaned out the LDA-SMC storage shed last weekend and uncovered a number of highly coveted books we bought and never sold; those will go out on our table, too.

The Autism Spectrum Support Group is now out of funds.  We're contributing to the EF workshop, plus we've just spent oodles (relatively speaking -- really just the last of our money) on promotional items (business cards, banners and signs, giveaways with our logo and website, etc.) plus our one fundraiser:  car magnets.

We dithered quite awhile about pricing.  We'd really rather give them away to spread the word, increase membership, become a presence -- though since we've been in existence for 11 years, I like to think we are at least somewhat of a presence.  But we have to refill the coffers.  Unfortunately, just like with the local annual Autism Awareness Day event held in years past, it's the families of people with ASDs who attend and raise the money from their own wallets.  (This year, the Autism Awareness Day event seemed to tap into the wallets of a hugely diverse group; I didn't feel all that guilty hounding Support Group members to attend!)  We settled on $7 for the magnets.  We've sold five.  We have to sell 28-1/2 magnets to make back the outlay.  Sigh.

We're considering lots of other ideas, too, but here's where I smack up against another need.  My daughter's Girl Scout troop decided to travel abroad in two years, to Italy and Greece on one of those educational tours, so all their cookie money and fall product sales will go towards the thousands of dollars each girl has to pay.  Cookies just aren't going to cut it, so the girls are already working on fundraising -- as are the parents!  (Because Girl Scouts has incredibly rigid rules about girls' fundraising, some of these activities will be done as "Friends of..." -- like Band Boosters at many high schools.)

Our first event is a yard sale on May 4th.  We parents are donating our own yard sale items, plus we're asking friends/neighbors for donations.  I've got one friend lined up, and I've spent several hours down the basement sorting my own items.  (It had to be done; I vowed after January's flood that nothing would go back where it belongs without being sorted and cleaned, and if I no longer have a use for it, it will be culled.  Aside from some boxes of paperwork left in the living room, the main floors are done.  The basement, however, became the dumping ground during the renovation, and it could be featured on an episode of Hoarders -- Extreme Edition.)  Girls will help haul, set up, post signs, and staff a bake sale table. 

We're considering selling Blue Crab tickets, Krispy Kremes, and BJs memberships.  We're looking into charity nights at Texas Roadhouse, Chick-fil-A, and Applebee's.  We're planning car washes and badge workshops.  The problem is that most of these ideas will work as fundraisers for either the trip abroad or for the Support Group, so I'm torn.  I don't want to bother people over and over again, but everybody needs.

Another problem is that this is a really bad time to ask local families to donate.  Sequestration's furloughs, though pushed back and reduced in number, are still the plan, and among my friends, their anticipation is already having an impact.

I grew up valuing doing for others; we rarely asked for help.  However, I learned more than a decade ago that perspectives can change on a dime when your child has special needs and you are the one who has to make sure they're met.  I'll ask for almost anything, make a pain of myself if necessary, to help them.  Fundraising, though, is new to me.  I'm outside my comfort zone already just doing the above, but here goes:  If you've got ideas for fundraisers, could you share them?  And if you'd like to donate (yard sale items, time, money) to any of the above, let me know.

[That felt just awful.  Do you think I'll get used to it?[


Sunday, April 21, 2013

Comatose to creative

I'm sitting here typing this post as my daughter is typing a lesson from her Typing textbook.  I've got to tell you that the curriculum for her Information Technology Science class is beyond boring.  It seems to be designed to see how many students it can put in a coma in one 45-minute period.  And for a kid with executive functioning and attention issues, it couldn't be a worse match.

Anyway, last quarter she just barely squeaked by with a C, and so far this quarter, she has completed NOTHING.  Not a single lesson.  That puts her 12 lessons behind.  Twelve.  TWELVE.

Last week, her Info. Tech. teacher called, so very concerned.  She was gracious; she was willing to think outside the box.  She did not display the attitude previously shown of expecting my daughter to be able to advocate for herself and to be more organized.  She just wanted us to come up with a way to reach her and get her off the current path of shutting down.  We talked for quite awhile.

So now, my daughter has to do part of each lesson but can demonstrate mastery of the teaching points with creative content.  For example, one teaching point is business letters, so for one of them, she's going to write to Mr. Krabs recommending a raise for Spongebob.  As long as the form and tone are business-like, she's good. 

Right now, with chocolate earned for each homework item completed and with the big carrot of dinner out when the homework list is done, she's working on the mandatory parts of the fourth lesson -- fortunately the last homework item tonight as I'm starving

Grateful to the teacher.  Grateful that my daughter is printing her work now.  Thankful that we've been frugal in other areas and can budget this incentive.

Sunday, April 7, 2013

Hearts

I started writing this blog several years ago because, as I've said before, I wanted to comment on a friend's blog.  I hadn't wanted to comment anonymously and hadn't thought to just sign my name in the comment itself, so I set this up and thought that I'd better say something or I'd have this dumb-looking empty blog with nothing but a name and a background color.

Then I started blogging.  Sometimes I wrote for me, and sometimes I wrote to share information with others, hoping they'd find it useful.  But mostly for me, to siphon off the thoughts that squirrel around in my head, occasionally to vent, sometimes to whine a little.

When my daughter's issues became so intense, so family-consuming, writing here became more of a lifesaver to my sanity than anything else.  I know that I don't reach that many people with my posts, but comments of prayer, caring, "we're in the same boat," have meant a great deal to me.  I'm not sure that I've ever said that here.

And to a caring friend who opted for a different pathway, my heartfelt thanks.  Plans are afoot.


Friday, April 5, 2013

April is Autism Awareness Month

Autism Awareness -- April is Autism Awareness Month, with April 2nd's being World Autism Awareness Day.  I think it's wonderful.  I wore blue for Light It Up Blue, and, as the coordinator of the Autism Spectrum Support Group of Southern Maryland, I post daily during April to help spread the word.  I'll also be staffing an information table on April 13th at a local Autism Awareness Day event.  (See the calendar on the Support Group's home page for details).  Having said that, I need to say that I'm about "awared" out.  There is not a piece of our lives left unaffected by Asperger's -- that's why it's called pervasive.  I also need to say that I really want Autism Education and Autism Understanding and Autism Acceptance.  I want my child to be understood as a person with gifts and quirks, and for those gifts and quirks to be valued.  

After writing the above, what did I find on Facebook today but this, the ultimate in Autism Acceptance:


Executive Functioning -- Several organizations have pooled their resources and are hosting a workshop on executive functioning on May 11th.  (Details are on the calendar of the Autism Spectrum Support Group of Southern Maryland.)  The presenters are the authors of Late, Lost, and Unprepared.  Before, when they presented here two years ago, I thought that I had a pretty good handle on EF and its impact on my son.  Truth is, I did.  However, what I came to realize as they talked was just how much they were describing my daughter.  That led us to Children's National Medical Center's Executive Functioning Clinic and the unmasking of her ADHD and EF issues.

I'd like to say that we've addressed those issues.  Sadly, last night I watched my daughter struggle with an assignment that needed her to toggle between the directions sheet, the answer sheet, and multiple web pages.  She couldn't do it -- the toggling, not the work.  It was just too much for her executive functioning-wise.  So she got upset and quit.  So much for a 504 Plan.  So much for differentiated instruction.  So much for her class grade.  So much for her self-esteem.  Do you think I could put it in her 504 that all her teachers are to attend the May 11th workshop?

13 Years in the System -- My son's 3-year re-evaluation is happening now.  I have all the evaluation reports and teacher comments.  All but two teachers see issues with organization and social skills, yet his evaluations don't support it.  I'm scared that the school team is going to recommend dropping him.  See, it's not that I want him to need supports; it's that I see that he needs them, and I don't want him to lose them.  I want him to learn to be independent, but he doesn't learn such things by failing.  That's not how his brain works.  He needs to be explicitly taught these skills and then supported until he's mastered them.

So why do I care if what I've said is that I want Autism Acceptance?  Why not leave him alone and let him be a walking poster of Asperger's?  I care because as a society, we aren't at acceptance yet.  He is still going to have to get and keep a job, get and keep friends, get and keep a family to the degrees that fulfill him.  And he absolutely does not identify with the Aspie community.

Fatigue -- When I started this post earlier today, I brainstormed a bit.  I fleshed out the above.  What's left is, "So tired."  Even as I'm jazzed about Autism Awareness and the great EF workshop next month, I'm just so tired.  And doesn't that really sum up the truth about special needs?