Wednesday, June 19, 2013


Well, summer "vacation" is here.  Vacation for them; not vacation for me.  Don't get me wrong.  I love them to bits.  But being on call 24/7 is mentally exhausting.

Current issues:

How to occupy my child with ADHD -- At the moment, she's writing the Great American Novel.  If you ever read about a brother and sister traveling across post-apocalypse Europe working to ensure the downfall of their evil father styling himself as Emperor, you'll know the idea germinated in the Summer of 2013.  My daughter said that after it has become a success as a book, she would like to go to LA to help turn it into a screenplay. I did tell her that she has to write it first, but the stars in her eyes plugged her ears. 

I'd like to see her paint more.  I love what she's done so far:





Summer Assignments -- Apparently the school system did not decide to eliminate summer assignments this year.  My daughter has only one:  Read and log a book.  My son, on the other hand, has more than a few.  This year, though, they don't seem to be as ridiculous as they have been in previous years, plus I made sure that he had the assignments before the end of the school year for students and that a teacher or his case manager had gone over the assignments and expectations.  He finished a piece of the AP Calculus AB assignment already.  Once the rest of it is done, we'll set up the AP English 11 schedule and get to work on that -- it looks like a major multi-step pain.  (He can do the work himself; he just needs help breaking it down into steps and setting up a timetable for completion.)  AP Biology is way kinder than it could be.  And AP World History is busy work, but it's the kind he likes -- maps -- so I won't gripe.

Viewing Selections -- Thank goodness for Netflix and AmazonPrime.  And for my kids' retro interests in Scooby-Doo, Disney, and, as of today, VeggieTales.  They still have some questionable viewing choices, but when faced with a leech up close and personal in all its blood-sucking technicolor glory on "Weird, True, and Freaky," they quickly switched over to something more benign.  Oh, yeah, "God is Bigger Than the Boogie Man..."  

What to Do for FREE -- Furloughs start next month, but we've been trying to cut back before they kick in.  We got in a few things, though:  My daughter and I visited my sister over Memorial Day Weekend.  We had a really nice, low-key visit that included a family picnic, a visit to South Street in Philly, and dinner at the Abbaye.  We had a little bit of the budget left over, so we went up to D.C. for the day to visit my friend from Arkansas who was there for a conference.  That was low-key, too, and since it included a really nice meal and a Metro ride, my daughter was quite happy.  And we went to Olive Garden (my kids' restaurant of choice since CiCi's closed) to celebrate the end of school and two quite reasonable report cards.

I figure with one week down, we're not doing too badly expenditure-wise.  (OK, don't look at the two trips to Bruster's for ice cream.)  We're using up the arts & crafts supplies in the basement, and we've had one friend here for a sleepover.  I still have to check into entrance fees for local parks/beaches.  (I don't like "chillin'" at the beach very much as I'm not a sun-seeker and burn in five minutes with SPF 7,000 religiously applied, but my daughter loves water.  The library would be an option, but neither kid enjoys it anymore.  I might get one visit in, but not more than that.  I'll probably go outside my comfort zone and go to some of the local events.  The River Concert Series may be good...

But Week 1 is done.  Only 62 more days...

Monday, May 20, 2013

In the merry, merry month of May

It has been just a roller coaster of a month.  I've been all over the place with activities.  My daughter's health issues are, fortunately, treatable with over-the-counter medications, so that's a good thing.

My daughter's Girl Scout troop is saving up to go to Italy and Greece in two years.  We had our first official fundraiser (after deciding to put all their cookie money towards the trip) a couple of weekends ago.  Eight girls/families participated and raised over $900 (a little over $100 per girl), again, a good thing though exhausting for the adults.  One thing that was really brought home during the yard sale was just how good my daughter is with little kids.  Surprisingly good.  She watched over and played with a couple of the younger siblings the entire morning and never flagged.  I'm going to investigate local babysitting courses, not so much for her to go babysitting in the neighborhood -- she's not ready for that -- but for Girl Scout/church "babysitting" events.  (One fundraiser closer to Christmas is going to be a "drop and shop" event:  The girls (with adult supervision) will watch your little one(s) while you go shopping locally.)

Note:  I just registered her for a Safe Sitter class in July.

The next weekend after the yard sale was the Executive Functioning Workshop.  The presenters were the authors of Late, Lost, and Unprepared.  My tasks came the two weeks or so before the workshop -- a lot of busy work, but since I haven't used my degrees in over 16 years, it wasn't too bad.  And I learned quite a bit about hosting a workshop, none of which is likely to get used in the near future as all the non-public-school co-sponsors are out of money.  However, I've got some ideas, for both fundraising and a new conference, that I'll put on the back burner for awhile.

Now I'm getting ready for my son's IEP meeting tomorrow.  Because we had a planning meeting a few weeks ago, tomorrow's meeting should go relatively smoothly -- just a few clarification questions about the draft that came home.  (Planning meetings are so useful, in my experience.  I go in with a much smaller team and work through all the points; they write a draft and get it to me early for review, and then when the actual IEP meeting is held, there are few surprises and little strife.)

However, there is one area that I don't think will be resolved tomorrow:  How will my son's IEP be implemented for all the summer assignments he'll have?  I don't believe in summer assignments in the first place, not anymore -- please tell me what university demands that students turn in an assignment for a grade on the first day of the semester?  It doesn't happen.  (OK, I've heard of it once, and it was shocking to all involved.)  It's not practice for the real world, and if you try to convince me that it's part of the college course for AP classes, I won't believe you.  My son has several IEP accommodations and a big goal to work on time management/executive functioning skills, yet he's left to flounder his way through summer assignments (which are sometimes easy enough to be of no concern (e.g., read a novel and log it) but have also been wickedly complex and/or unclear as to what the expectations are (go here to see what he had to complete the summer before 8th grade)).  He can't even get clarification from teachers because high school summer assignments in his experience haven't been finalized until the last day of school for teachers, who, no blame here, disappear for the summer.

That's tomorrow.  This coming weekend, I'm taking my daughter to my sister's in New Jersey.  My sister is planning a family picnic for the holiday, and I'm looking into what my daughter and I can do in Philadelphia or thereabouts.  More planning on that after tomorrow's meeting, but I am so looking forward to it!!

I'm also trying to fit in morning coffee dates with my friends before the end of school.  That and all my doctor appointments.  I have no liking for taking my children to their doctor appointments; I have no desire whatsoever to take my children to mine.  Then I just have to figure out what we're going to do all summer. 

For someone who didn't know how she was going to get her daughter through the school year, that last item isn't too bad.

Wednesday, May 1, 2013

The county budget

I usually speak at my county's annual public hearing on the budget.  (I missed last year completely -- it just wasn't on my radar.)  Last night was this year's hearing.

Typically, county government people go through the proposed budget and the procedures for public comment (often takes about an hour), and then starts the parade of people who signed up for their three minutes to speak.

Here's what I said during my three minutes:

I’ve spoken to this Board six of the past seven years, always asking for funding for St. Mary’s County Public Schools.  This year my topic is still funding for SMCPS, but I have to start out with a big “Thank you” for the funding already slated.  This funding means that teachers can continue to do the status quo “more” with less.  They won’t need to do more “more” with even more “less.”

My focus with SMCPS and St. Mary’s County as a community is on special education and appropriate service providers for people with special needs.  I usually drive to Baltimore and D.C. to get the specialists my children need (as do many other families in the county).  However, not everyone can afford to do so in terms of time or money. I am encouraged to hear of the new facilities in the works on Great Mills Rd. that will increase the number of local providers.  I’d like to emphasize that meeting needs now will significantly reduce the money spent when children become adults.

I also rely on SMCPS to meet the educational needs of my children.  My family is impacted by multiple mental health and medical needs, most significantly by Autism.  It was with great interest that I read Dr. Martirano’s Letter to the Editor in the April 24th edition of
The Enterprise.  In it, Dr. Martirano presented a lengthy list of supports that SMCPS offers to students/families impacted by autism.  In my opinion, each of the points in the 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 will follow up on those gaps in services for students/families impacted by autism with Dr. Martirano.  That’s my job as a parent, as a community member, and as the coordinator of the Autism Spectrum Support Group of Southern Maryland.

Why I bring it up here is because without further funding of the school budget, the services listed in the letter cannot be systematically provided, as needed.  Therefore, when these children exit the school system at 18, 19, 20, 21, the cost of care and services becomes a huge drain on
county resources.  This Board of Commissions seems to be all about paying now to avoid future expenditures at higher rates.  It only makes sense, ethically and financially, to do the same for our children.

Again, I thank you for what you’ve done.  I ask you to consider the true costs of paying less now to educate our children only to pay more when they grow up.  Thank you.


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. 


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
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.

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 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


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?

Thursday, March 21, 2013

Telling is futile

It's back.  My daughter's depression.  Not as bad as it has been, but still a force to be reckoned with.  Old patterns are back, too.  Not getting up in the morning.  Putting off homework.  Feeling bad about doing so and then taking it out on family.  And this morning, destruction of property.

I'd very much like to get her into therapy.  (Past attempts failed when she refused to go, tried to kick out the car door glass, ran away from the office...)  She said she'd go if I never talked with the therapist myself, never presented a balance to her world view, never offered background information.  Of course, her saying she'd go if, if, if doesn't mean she really would.

Last night I heard about a local therapist who is said to work well with children on the spectrum.  Maybe he could help my daughter.  I'm in the process of getting more details.

A couple of weeks ago, I broke down signing my daughter in late at school.  I spoke with the school counselor; she said she'd help, but so far, I haven't seen any evidence of it.  I really hate that my daughter "doesn't qualify for special education services."  She has a 504 Plan with a handful of accommodations.  What she needs help with at school is predominantly executive functioning skills;  they need to be taught and practiced at school, where work happens or is assigned.  Twinkie accommodations don't get at the problems, and teacher statements like, "She needs to learn to be more organized," or "She needs to learn to advocate for herself," show just how little she is understood.  The child has ADHD.  Telling her she needs to learn it is futile.  Teaching her may yield results.

We had had such a good window of opportunity, now lost, when the effects of her depression were low.

I don't know how to effectively advocate for this child.  I started when she was in Kindergarten -- called her first PST meeting.  Results:  "She's nothing special."  Had another one a year or two later (though there were fewer problems in 2nd grade because her teacher took such good care of her).  Results:  Nothing.  Identified mild depression/mood dysregulation in 3rd grade.  Addressed need for rigor in 4th and 5th grades.  Identified executive functioning issues in 5th grade; attempts to address them cut off when depression symptoms became severe.  Called another PST meeting early in 6th grade, yielding an ineffective "PST Plan" that some of her teachers didn't even know about.  Tried counseling multiple times.  Identified ADHD -- Inattentive Type and a few other issues in 6th grade but essentially left her unsupported in one of the most organizationally difficult years of the rigorous program she was in.  Lost the academic rigor after 3 quarters of 6th grade.  Had special education testing performed at the end of 6th grade with the result of not qualifying for services and being referred back to a 504 Team.  And for the three quarters of 7th grade so far, have heard, "She doesn't need it," about the accommodations that she does have.  So now, when work piles up the last two weeks of the quarter, she still doesn't have the EF skills she needs to get it done.  And the cycle continues.

I wish I had something brilliant to say.  Or better, to do.

Saturday, March 16, 2013

One fifth

It's mid-March.  The post-flood renovations are almost complete.  I've got new wood laminate floors, new vinyl, fresh paint...  I've got a bathroom that feels like a peaceful retreat.

And in a few weeks, we'll lose a fifth of our income to sequestration.

I won't purchase the gazebo for the back deck; I'm not sure I can afford a replacement canopy for the frame that's still there even if I can find one.  No canopy means an unusable deck which means a loss of social options for my daughter.

I'm canceling my plans to take my daughter to New York City for the day next month.  I don't think I can even budget for the drive up to New Jersey to see my sister; tolls alone are $25.

Yard projects are on hold.  And we may not be able to afford the lawn mower man this year.  (This one is HUGE as hiring the lawn mower man two years ago probably kept us out of divorce court.)

There will be no summer camps this year.

Therapies I was considering trying will not be started.

Behavior incentives will have to be rethought.

Food.  Limited eating out.  Careful menu planning.  Occasionally springing for the box of Spongebob mac & cheese because it makes my daughter happy.

There is so much more to say; the emotional impact is as great as the financial.  And the cost to my children is significant.  It's already so difficult to get my children the interventions they need.

My stomach hurts every time the thought of sequestration enters my head -- more often the closer we get to the mandatory furloughs and to 10 weeks of summer vacation and no funds for fun -- and words get stuck in my throat.  I don't want to hear any more political excuses.  I just want it fixed.

Tuesday, February 12, 2013


I did it!  I took a (one-night) vacation with a friend!!  We made it out our respective doors and up to D.C. for a grand time:  three thrift stores, a hotel, happy hour, the Cheesecake Factory for dinner, and Les Misérables at the movies, all in the company of a lovely friend.

The next weekend, I took my daughter to New York City for her birthday.  Neither of us has been there before.  We stayed with my sister in New Jersey and took NJ Transit into NYC for the day.

My daughter had her heart set on seeing Wicked, but with the lowest ticket price at $103, we just couldn't afford it.  So we opted to try for tickets through the theater's lottery -- you know, get there at such-and-such a time, put your name in the bingo spinner, cross your fingers, and have cash and ID ready.  At $30 a ticket for front-row seats, it's certainly worth trying!

My sister, my daughter, and I each put our name in for two tickets (the max any one name can get), chit-chatted with people from Massachusetts, NYC, all over, really, and generally chilled for awhile.  Well, I didn't really "chill"; I just sort of passed the time.  I thought I might throw up from the stress. Even though my daughter had a contingency plan of skating at Rockefeller Center and then a trip to the Top of the Rock, I really wanted Plan A for her.

The theater man spun the basket and pulled out 13 names, telling those not called to stay as he had to check IDs and verify cash payments.  Through Divine Intervention, I'm convinced, seats opened up and three more names were drawn.  My sister's was the last.  We were IN!!  The man from Massachusetts congratulated my daughter, wished her happy birthday, and went off with his wife to see Jersey Boys.  (My sister hadn't wanted to see Wicked even if we had had enough tickets, so that was OK.  She visited every Starbucks in Times Square and seems to have enjoyed herself!) 

As we walked around before show time, Times Square seemed just a little bit brighter.  Once inside the theater, I bought my daughter a Wicked hoodie and the souvenir program/poster/soundtrack package.  When the play began, we truly were close enough to see them spit.  And did.  Again, God was at work, because the couple behind us -- known from the earlier chit-chatting -- invited us to a backstage tour with "the Wizard," a friend of theirs.  My daughter's excitement was through the roof! 

My daughter's first transit train ride, first time in NYC, first cab ride, first purchase from a street vendor, first time in Times Square, first Broadway play, first time in front-row seats, first backstage tour, first time meeting a wizard... topped off by dinner at the Abbaye back in Philadelphia with her aunt and uncle.  I'd say that it was the. best. day. EVER!

The day after we got home -- her actual birthday -- we went out to dinner.  And came home to a flooded house.  An upstairs sink was left running with the drain stoppered.  Maybe three hours.  Water down the floor vent and into every nook and cranny, behind every wall, dripping through ceilings, under every piece of carpeting and vinyl, from the 2nd floor to the basement.  Sure, after 16 years, we needed new flooring, but this isn't how I wanted to get it!

The house has been torn up ever since.  ServPro dried us out.  Today the repairs started and are scheduled to continue for a week.  (Naturally, we have mentally doubled that estimate because, you know, once bitten by the contractor scheduling delay bug...)  Most rooms have been cleared of everything except the furniture.  Since a 2'x6' pantry is considered a room, all of my food is bagged up on the dining room table under a sheet of plastic.  I've been relegated to the typically unused living room -- housing a mammoth desk, a piano, and bookshelves -- along with all the first-floor breakables, a ficus tree, and the dogs.  There's no door on the living room, so my desk chair rolls back into their crates.  (Daisy, a border collie, likes to herd all creatures she considers "free range."  Most service workers don't take kindly to it.  Milo just wants to be loved and will jump all over you to get him some of that.  So yeah, they're crated.)

I can't say that I mind.  The house will get fixed.  Faucet lessons have been learned.  We lost only a six-pack of pocket tissues stored under the sink.  And once the repairs are complete and the new flooring is in, we'll be ready to throw a party.  Or a wedding, it's that spiffy.

Today, now that all my prep work is done, I'm sitting down to write.  Plus somehow the snack bag from the pantry is conveniently not under the plastic sheeting in the dining room but is just right handy to my laptop.  Pretzel, anyone?

Wednesday, January 9, 2013


I've been working hard this school year to meet up with friends for a cup of coffee and some catching up.  It runs in fits and starts, but I've been doing it.  It gets me out of the house and out of isolation, and since I keep it to one or two other people, it doesn't take me outside my social comfort zone.

Panera seems to be the location of choice.  I always get the same thing for breakfast (a bagel) or for lunch (a "big kid grilled cheese"), so the otherwise overwhelming Panera menu is not the obstacle it used to be.  (I used to walk in the door, grab a paper menu like a lifeline, and sit down to study it as if for a midterm before getting in line with all the people who glance at the menu board and whip off some complicated-sounding fru-fru latte or sierra-turkey-on-focaccia sandwich.  (Just what is "sierra turkey"?)

This morning I met a friend.  I ordered a bagel -- no surprise there -- and a coffee (in a to-go cup as I'm prone to spilling).  We settled in and had all of 15 minutes before she got a call to come pick up a sick kid from school.  Sigh.  Well, that's the way of it, isn't it?  When you're the parent of a child (or two) with special needs, the odds of making it through a day without a call from school can be pretty slim.  Put two such parents together and, well, you know... Ring ring... Ring ring...

She left by way of the trunk of my car to pick up the box of my-family-won't-eat-these-gluten-free-things castoffs.  Bless her.  And no, I don't want any of them back, thank you for taking them out of my house.  I went back in to finish my bagel, check my email, read a blog or two, and to write a post myself.  (Hadn't known I had one percolating, but there you have it:  I'm not at home being all distracted by The Duchess of Duke Street, the dogs, the dishes, or the daily dinner dilemma.  (Today's episode has been brought to you by the letter D.))

After my daughter was released from the hospital, my husband said to me that we could work out a little vacation for me -- a break from the constant horrific stress levels in our house.  It's 15 months later, and this weekend, just two days from now, I'm going away with a friend for that getaway.  It's not much, just one night in a hotel (with included cocktail hour and full breakfast) and some retail therapy by way of a couple of huge thrift stores outside D.C., but I'm thrilled.  The only special needs to be accommodated will be our own!

We've set it up so that our husbands will be successful.  They will fly solo with their kids only after school Friday through Saturday morning; then two of the kids will be at a Girl Scout function for nine hours, by which time we'll be home again.  And given that the two of us who will be gone are, well, us, we'll have left lists and meals and contingency plans.  (Funny how that doesn't work in reverse; when our husbands go away, it's just, "Bye, see you next week, and by the way, can you pick up my shirts at the cleaners?")

With our families set up and our reservations confirmed -- and with plans for dinner at the Cheesecake Factory -- we should be able to decompress nicely, thank you very much!

But we did pay the cancellation insurance because, you know, Ring ring... Ring ring...

Saturday, January 5, 2013

A year

What a strange day.  This is the first anniversary of my mother's passing.  I've been missing the positives of her quite a bit these past several months, moreso the past couple.  I've been sillier with my daughter lately, and that makes me think of silly things my mother did or said.  I've passed more of those along to my daughter recently than in the entire previous decade.  ("Do your ears hang low, do they wobble to and fro...")

Background:  My mother had multiple mental health issues, some she addressed, some she didn't.  One that she didn't was Borderline Personality Disorder (BPD).  A result of her unaddressed BPD was my need to protect my daughter from the negatives, particularly emotional manipulations.  In doing that, my daughter missed out on the positives of a relationship with her grandmother.  (Well, my mother was also physically more limited these last years and interacted less with everyone.  And she was afraid of my son's Asperger's -- but that's for another day.)

It's nice to remember the positives.