So, there was this girl named Ruby…

As a creative person it is not uncommon for my brain to be filled with ideas, projects, stories and then suddenly nothing. Then it starts over again. Sometimes a get up while in mid-conversation with my husband and start gathering items for a creative photography project. Sometimes I load up the car and go for an adventure. Sometimes I sit at the computer and type all that is in my head as fast as I am able. It is a great gift that I am an excellent, and very fast, typist. (I must thank my parents for having an at home business run by the whole family that required monthly bills being typed, stuffed, stamped and mailed.) TANGENT!!

I’ve had a story swirling in my head in various forms for quite a few years now. Recently I stumbled across a Facebook post from a website called Hokustory (www.hokustory.com). At that time I was working with a variety of special needs children at all reading levels. I was also dual immersed with my own children’s struggles in school. Thrilled to find a free, online resource of high content, low reading level books for the learning disability/difference crowd was amazing. Even cooler, I noticed the website was holding a contest to increase it’s library of books. My first thought was to tell my 17 year old son (who is a phenomenal story teller) about the project. The stories had to be high content (for middle school and above), but also added the challenge of being written in simpler vocabulary with straight forward plot lines. My son was excited, checked out the website and came back to inform that he needed to be 18 to enter. DOH!

At that moment I had an epiphany — why couldn’t I write a story. I knew exactly what I would write. I knew the characters — as they had lived in my head for years. I wrote a story a few years ago about a little girl who was lost, stuck in her head, and came across a bag of marbles that lead her to her guardian angels. Her name was Ruby. The only problem (which was not really a big problem) was the story was not written for this target audience. I had to rewrite, rework, make relevant and reconstruct Ruby. The other challenge — I had two weeks to submit the story.

I wrote, edited, proofed — and told no one. It was personal enough that I wasn’t quite ready for the “you suck” syndrome many creatives experience. The contest announced four top winners. I was not on the list. Oh well. Time to move on. Maybe it just wasn’t good enough. A couple weeks later I received an email from the StoryShare Contest (the organization partnered with Hoku and Tar Heel readers) informing me that my story was selected out of 500 submissions. It was placed in the category “by a parent” and would be voted on for a sizable cash prize. I had to read the email twice, send a reply asking for verification before I could literally pinch myself and start to share my accomplishment with the world.

So, who is Ruby? Ruby is a middle school girl who struggles. My vision for the story was that she had an unopened tool box into her brain. Both her teachers and she didn’t know how to access her strengths. Meanwhile she floundered in full time special education because she could not access general education classes. The key to her brain falls within a bag of magic stones. They bring her to different guardian angels who show her how to unlock her strengths. As a result the world around opens up to her.

The winners of the StoryShare contest will be announced after March 21, 2014. I feel totally overwhelmed by the support I have received from friends, family, educators, friends of friends, and even some people I’ve only recently met. I’ve even begun to think about looking for a publisher for the story — and potential series about Ruby and her Magic Stones.

If you would like to read my story please visit http://www.storysharecontest.com. My story is listed in the “by a parent” category. If you love it please click on the heart in the upper right corner to vote.

If you would like more information about Hokustory (the amazing website encouraging all this writing) please visit their web page at: http://hokustory.com/contents/about


Forms

Week 11: TOY

As a parent of children who qualify (or are being evaluated) for special education services, neuropsych evaluations, and/or any related services, I have been subjected to piles and piles of information gathering forms. Of course, this includes the form informing me of my HIPAA rights, sped processes, and district disciplinary guidelines. My next blog may address acronyms associated with such forms, but I digress.

I, said parent of complicated children who require forms, have patiently filled out a small forest of forms over the last ten years. Apologies to the trees!!! However I have to declare my most recent foray into the land of forms rubbed me the wrong way. It may have been a timing issue (aka: hormone induced mania) or perhaps the addition of a second child to the sped form party, but I lost my cool and got irritated. I think the underlying assumption that my child’s newly diagnosed acronyms and learning differences are somehow associated with number of chores, type of discipline, variety of foods and relationships with various family members is insulting. I almost veered toward passive aggressive and answered the “What activities does your family do together” question with the following response:

“We enjoy watching R-rated movies together late at night. We schedule this quality time after the children have been home all day unsupervised with a pantry full of Mountain Dew and Cheetos to sustain them as we have heard a colorful diet is important. We encourage creative play including running with scissors, playing with matches and swimming after a large meal. When not working the streets to support my crack addiction, I enjoy reading Penthouse Forum aloud to my children before putting them to bed without bathing or flossing.”

Don’t fret, I answered appropriately (and honestly) instead.

My middle girl had to fill out her own goals for her ALP (advanced learning plan) as part of a gifted program in her middle school last year. The facilitator of the program sent out forms, collected forms and did nothing else. My girl was acutely aware of the bureaucracy of the program and chose to simply not fill in her goals. I think she figured she could monitor her own goals better independently. In another moment of parental form frustration I suggested to her that she just write the following response:

“When I get particularly bored in class, I find it helpful to answer the voices in my head as they are more supportive than this school’s g/t coordinator.”

I thought it would be entertaining to see if the forms were actually read prior to filing?!? My smart girl did not take my advice and chose to ignore the request to fill out the form altogether. Either way, the form was filed without being read anyway. ARG!

The form that put me teetering on the edge this month was the one informing me that my son had not passed his vision screening at school. I asked him if he wore his glasses that day. He said no. DER! There was a section of the form that was checked and highlighted, please return with a doctor’s signature proving you have followed up on this issue. Perhaps a hormonal response, but really, you need me to prove I am taking him to the eye doctor? I’m tempted to take a video of the entire eye exam, which has already been scheduled by the way, and email it to the school district.

In my moments of insanity this week, I contemplated creating some forms for my child’s teachers who are not doing a stellar job of providing his IEP accommodations. I would now like them to sign the highlighted line indicating this week he was provided with copies of notes and extra time on tests. They can check the box on a scale from 1 to 10 that they Agree, Strongly Disagree, or Have No Opinion about the importance of my form. Again, I digress.

I still fill out the forms thoughtfully, but I know I can’t possibly be alone in my form frustration!! Anyone else out there? Bueller? Bueller?


Is there a light at the end of the tunnel?

Week 22: Red
Photo by Lori Werhane Photography

The other adult in our household often asks toward the end of the day as he is planning his evening, “(we)don’t have anything tonight, do (we)?” I usually begin by saying, “did you check the family calendar,” but then pause and say, “Yes, (we) have a lot going on tonight.”

Alarm buzzes, it’s 5 a.m., groggy, I don’t want to get up, but it’s time to get the family machine moving. Shower, make up, hair, get dressed and walk downstairs. Coffee! I take a few sips and then begin the assembly line of lunch making. One healthy eater, one leftover eater, and one snacks and PBJ eater. Empty dishwasher, refill dishwasher and take out something to make dinner later. Wake up kids. Wake up high school son every five minutes until threats need to start. Make sure lunches are not forgotten and roll out the door at 7 a.m. Drop high school kids off on the way to work. Work 7.5 hours, but only get paid for 7 as school districts are very rigid in their contracts and hourly pay. See blog titled “Life in the SPED trenches” for details of those 7.5 hours. Leave at 3 p.m., brave after school traffic/construction to arrive home. Empty dishwasher, fill dishwasher, fold laundry, move washed laundry to dryer and then begin to prep dinner that may or may not be met with gratitude. Step around backpacks, piles of shoes, dance bags, and dirty clothes. Make phone calls to schedule orthodontist, pediatric cardiologist, and dentist appointments. Discover smell in living room. Crap, the rawhide treat my pup had two nights did not digest well. Two high school children walked around pile of poop; or perhaps just really did not notice. Teenager blinders are a real phenomenon. Remove poop from carpet — apply stain remover and sanitizer TWICE all while trying not to vomit. Wash hands. Sit down to fill out forms and write checks for upcoming field trips, before school care, doctor appointments and back to school nights. Greet fifth grade daughter at door with a snack and hug. Carpooling begins at 4:30. Drop high school girl off at dance then home for very quick bite of dinner. Clean up after school snack dishes, and load up momvan again to take elementary girl to swim. High school brother stays home to do whatever he does before leaving for a fencing class later that evening. Remind him to do homework, check planner, please let dogs out, and remember to close garage door when he leaves. Get elementary girl to swim and hop on elliptical for 45 minutes while listening to music and people watch. Elementary girl gets out of pool and is freezing. I lead her to locker room for hot shower and wait. She forgot her fins on pool deck. I retrieve while she gets warm. Load up momvan and drive to dance studio to pick up big sister. Home forty minutes later. Walk in to find new dishes in sink and in family room. Load dishwasher, run dishwasher, and pick up the days worth of dirty clothes off of the floor. Let dogs out for last pit stop. Prep vitamins and medication for son for the evening. Fold laundry. Take my own vitamins and Advil PM because my brain is tired, but doesn’t always turn off for sleep. Tuck in little sister, tuck in big sister, carve out a little time to see how their days were and then yell good night across the house to big brother. He grunts back. Brush teeth, wash face and apply anti wrinkle creams so the next morning’s dark circles are not too scary. Crawl into bed and contemplate the dusty novel on my nightstand and realize I have no attention span left for it. Set alarm for 5am. Watch mindless television for an hour until Advil PM kicks in.

Wash, rinse, repeat, and dream of a beach in two weeks!


The follow up of the follow up meeting to the Special IEP meeting relating to the IEP meeting…

Week 17: Thanks! (2/2).. I am always thankful for time! Time spent, time shared, time given!
Photo by Lori Werhane Photography

Confused yet? Me too!! So, exhale, after sitting on my hands and letting the machine work its magic for five weeks I began to notice our new, amazing, awesome, perfect IEP accommodations were in fact NOT being implemented. Quick email off to case manager asking for clarification on NO quiet room for tests, NO weekly meetings with teachers, NO modified work to show mastery, NO weekly meetings with new assigned mentor teacher (a head nod across the room does not count), and NO copies of notes from teachers. Why on earth did we go to the trouble of having a special IEP meeting with District Special Educators, Vice Principals, Advocates and Educational Coaches if the actual items discussed were meant to only be typed up, distributed and clearly filed in the circular file on the floor.

So, we called a meeting to discuss the meeting with our new case manager. She seemed quite competent, but really just needed clarification on how important the accommodations listed on our very formal, legally binding document were. Ya know, cause teachers have large case loads and not much free time to do things like provide accommodations. INSERT SARCASM!!! I can whine, bitch and complain here, there and everywhere but in the meeting to discuss the talking points of the last meeting prior to the phone meeting leading up to the informal meeting. This is why I have the most excellent advocate on the planet!! She is worth every penny. I sit back, bite my tongue, breathe a lot and let her and my son calmly explain why each and every accommodation is important. IMPORTANT!!

I only wish I could somehow bill the school district for my Advocate, Academic Coach, time off work and liquor store bills.

Hopefully we are back on the right track. Clarifications have been made. Adjustments have been included. Ts have been crossed, Is dotted. I said please and thank you.

The next meeting is in early December. A big one. THE Triennial IEP Review! Deep breaths!


Life in the SPED trenches…

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Paraprofessional (n) — a person trained to assist a doctor, lawyer, teacher, or other professional, but not licensed to practice the profession.

I have just finished an especially taxing week at my job as a paraprofessional in the severe and significant needs wing of a public middle school in the south Denver suburbs. I often write about my own personal struggles with my high functioning, very mildly impacted, twice exceptional child; however I am not sure my blogging world is aware of my double immersion lifestyle. I exist on both sides of the SPED table. parent/advocate AND advocate/provider. I haven’t written about my professional experiences in the SPED trenches only because I worry about breaking confidentiality of my students and colleagues. So today’s blog will be purposely vague. I think it’s always good for anyone to have a perspective of the whole picture when understanding a special education child’s daily care, educational triumphs and struggles.

We are sometimes called paraprofessionals (paras), education assistants (EAs) or aides. What do we do? Well, we are the hourly employees who fall under the umbrella called “classified staff” within the district hierarchy. My job description says I must be able to lift 70 pounds, provide a variety of services to students with physical, emotional and cognitive disabilities. The requirements also state an education level of at least high school diploma. There is so much more to this job…

Here is what I have seen during my years as a “para”. WE are almost always college educated. Some of us are also in the process of pursuing degrees in special education. WE are sometimes parents of special needs children. WE provide love, nurturing, and dignity to some of the districts most severely impacted children. WE are creative, funny and a often times silly as we modify middle school concepts for children who work at levels ranging from K-5th grade. WE are always finding teachable moments in every part of the day. WE understand how much harder a child with disabilities works to navigate the social, emotional, physical and academic components of a regular middle school day. WE also know when it’s time to decompress, carry a weighted core ball around the school planter, walk laps, take deep breaths or just sit quietly. WE also offer hugs, high fives and exploding fist bumps. WE teach social stories to a boy crazy girl in a wheel chair so she can talk to her favorite boy in a general education class. WE teach typical kids it is okay to ask questions — especially directly to the child with disabilities. And it’s awesome to be a friend to everyone.

As a para I also hope my students’ parents understand how important it is to me that their child learn something every day. I work during my time off to develop curriculum that will reach each individual child’s strengths so they can feel successful at school. Sometimes it’s through technology– reaching a child who doesn’t write well, but learns by finding pictures via Google Images and then creates a Google Docs presentation. Or reaching a child who shuts down at the thought of academic work, but is naturally artistic by providing an opportunity to show his mastery via flash cards with drawings. Sometimes we just read aloud and talk. It is always amazing when you see big, bright eyes and a smile from a child who just realized they did something amazing. I’m never sure if their parents realize how dedicated we all are to their children.

We don’t work alone. We are guided by amazing special education teachers, speech/language pros, OTs, PTs, school psychologists, district specialists and general education teachers. Paras are generally those executing the goals and objectives passed down for each child. We read IEPs (when they are provided), we take data, we provide accommodations, we communicate concerns and collaborate to find solutions. We are part of the team.

Mostly we genuinely love and care about each and every child we support. We celebrate their good days — and our hearts hurt on their bad days. We work very hard!

Remember it takes a team approach to help every child succeed. On that note, I must be going — I have a unit on Mesopotamia to modify for next week’s Social Studies class.


An enigma wrapped in a riddle…

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My son is twice exceptional. Gifted IQ combined with a slow working memory/processing speed wrapped in a physical disability called PDD-NOS… soon to be something else due to the new DSM V changes. I am sure to write a post after we learn his new acronym. Mostly we call him quirky and complicated.

This year we have opted to do a private, full neuropsych evaluation because our triennial review is coming up in December. This year is important because it is the year my guy will take ACT/SAT tests for college admission and he NEEDS accommodations on the tests. He will also need disability services in college as well. The neuropsych is a critical component in qualifying for it all. At our last triennial review we were basically told the district was giving us a gift by letting my son stay on his IEP. You know, he was actually doing grade level and above work — which is completely ridiculous since his verbal IQ is at the 99th percentile. He was also doing “well” because he had a long list of accommodations that were mostly being used. Go figure.

This year as he enters his junior year in high school we had to call a “special IEP” meeting in August. Why? Well, we noticed my guy didn’t meet any of his IEP goals in the last year — well, actually two years if you look back far enough. We hired an educational advocate last year to help us revamp his IEP. This put the school on the edge of their seats, but not enough to actually provide him with any support or accommodations. We decided it was time to make a bigger stink. He is a junior this year and we are running out of time to wait and see. We called a meeting and invited our current case manager, the vice principal in charge of SPED, the district coordinator in charge of high school sped, our advocate, our academic coach and my son. I was pleasantly surprised to see the school staff had come prepared to revamp the IEP in a thoughtful and smart way. My guy now has a new case manager (who we hope will do more than his previous one) and a new mentor who is his Honors Chemistry teacher (amazing!!). He is now meeting with his teachers weekly to determine what assignments will show his mastery of the subject and which ones are just busy work and can be skipped (I wish this one was in place on day one of forever). All great things.

Something beautiful happened at this meeting. I kept mostly silent. I told my advocate and good friend I was planning to sit on my hands and chew a large piece of taffy.  I let my son use his amazing language skills to explain to this very intimidating room why he needed the changes in his IEP to succeed. He was eloquent, polite and very brave! It was much more effective for him to self advocate in this situation than for the school staff to hear my rantings. It also gave him the confidence to continue to self advocate as school started. He is learning how powerful his voice can be!

My guy also wrote an email to all of his teachers explaining who he is and what accommodations he needs most. I suggested the letter, but he wrote, edited, and sent the email. I want to share it because it really sums up who he is.

I am beyond proud right now. Fingers crossed. Holding breath. Looking ahead!!

“Dear Teachers,

If you are receiving this, I am in your class. For those of you not familiar with the enigma wrapped in a riddle that is myself, then hopefully this will help you understand a little bit about me, and more importantly, how you can help me succeed and help follow my IEP.

First of all, the way my brain works is a little different. Concepts come very fast to me, but pulling the concepts out of my brain very fast is hard, so that’s why extra time is a must for me. That means for everything, including tests, quizzes, and assignments.

Second, I have a hard time writing with a pencil for extended amounts of time, so that’s why I type almost everything. I have a computer that I use in class and ,with the exception of math (it’s easier to just write out problems than type them up), I need to use it for all written work.

The third and final quality that you need to know about me is that I am horrible at taking notes in a fast manner. that is the reason why a copy of notes is in my IEP. I need a copy of notes, whether it be emailed to me ahead of time, or given to me in class, whichever works best for you.

I look forward to a great year with all of you. I will see you all when school starts. If you have any questions, fell free to ask me.

Sincerely,

Son of Denverlori

P.S. My use of the oxford comma is completely correct. I think it is organized, eloquent, and necessary.”

I adore this kid!!! Cheers and hope all of your IEPs are going well.


Stream of consciousness from a mother on the edge

Walking on the treadmill this morning because there is literally a blizzard of snow fall out my window I found my mind racing, running, and spewing. A week of babysitting special educators and administrators at one of the state’s highest ranked high schools left me mentally exhausted.

One would think the fucking standardized tests that take over the building once a year would require a great deal of planning. Ts to be crossed, Is to be dotted – yet in the enormous amount of preparation my child did not receive the accommodations detailed in his IEP. The special educator who I suspect was in charge of putting his name on a list for extended time and use of a keyboard during these stupid tests forgot him. That is the only logical explanation I can come up with. FOR-FUCKING-GOT him!!!

I asked son after day one of testing if he received extra time. He didn’t know. He doesn’t often “need” the time, but definitely NEEDS the illusion of extra time as a stress reducer.  I sent a brief email to special educator verifying his standardized test accommodations. She responded, like a coward, I will forward your question onto our vice principal in charge of testing.

He responded, “We have been monitoring students use of accommodations in the regular classroom and since your son has not requested extended time this year he will not receive the accommodation.”

My first thought was, well he also has an accommodation for a quiet place to regroup if he has an emotional breakdown, he hasn’t used that this year either.. is this no longer available too?” Email back to vice principal was sent after I called my son out of school on the day they would be testing for reading and writing, asking if he would also not be allowed to also use a keyboard – an accommodation he has received since fifth grade. Vice principal calls district testing coordinator who verifies that my son does actually get that one.

Son goes back to school and completes the rest of his testing in a private room with keyboard and extra time. WHAT THE FUCK! What a huge, fucking crack my son just fell through. This makes me question every single moment of his day and if he is receiving anything at all from this highly ranked, award-winning high school. My next question, will he receive accommodations on his ACT? Oh, that’s a different story. We need to document that he has used extended time on exams/assessments during the regular school day. My question, one of my child’s IEP goals is in self advocacy. Do you think we would even have an IEP if he were organized enough to schedule a room with extended time for each test or quiz? This would be one hell of an accomplishment for a kid with executive function issues. They could cross that goal off the list immediately.

So, next week I learn more about ACT accommodations from the vice principal and apparently a room full of other professionals at the school. I am pissed, I am tired, I’m broke and I don’t want to babysit anymore!

A scene from the movie Terms of Endearment keeps running through my head.  Shirley McClain’s character is at the hospital with the dying Debra Winger. It’s time for her pain medication and it is not coming. She runs through the hospital screaming, “GIVE MY DAUGHTER HER SHOT.” I feel like that lunatic mother screaming, yelling and demanding what her child needs and DESERVES.

Rant over. Thank you for letting me also include some much-needed curse words. ROAR!


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