Dear HGTV,

There is a show on HGTV or one of those DIY cable networks called “Love It or List It.” My husband watches it more often than I do, just because he enjoys a good afternoon of channel surfing more than I.

Anyhoo, the premise of the show is a homeowner has a list of projects that need to be done to their home in order for them to “love it” and want to stay. If they can find a new home that meets their criteria, budget, etc. then they will “list it” and move.

Today I decided my home is the perfect project for this show. I’ve decided to write and open letter to Love It or List It and/or any other show that resembles the premise.
……

Dear DIY house show,

I have lived in my home for over eight years. We have four bedrooms upstairs – each with its own full bathroom. GASP! The main floor has an office and another full bathroom. The basement has a bedroom-like room, but since it doesn’t have a window it doesn’t count. However, it also has its own full bathroom. GASP! Yes, count them up.. SIX full bathrooms. Here is what I need you to do. Either consolidate the six bathrooms into two and half or make them self cleaning. You see, today I tackled the project of cleaning my three children’s bathrooms. Our builder cheaped out (we are the third owners and didn’t pick original options) and thought it a great money saver to carpet bathrooms. I think it would have been interesting if they also installed black lighting to show the varied amount of forensic evidence lurking in the carpet fibers — especially in my oldest son’s bathroom. I am scared to enter it without a Hazmat suit on. The builder also thought it would be great to install small, white tiles with white grout in five of the six bathrooms. I’m sure that was pretty for the first year. I personally used TWO magic erasers today to scrub off soap scum, mold, and what appeared to be blue hair dye from white grout just today. Guess what? Blue hair dye does not come off of grout.

I also would like a new kitchen counter top and kitchen sink. My current countertop is large tiles with… grout! I have no idea what the original color of the grout was, but now it is… hmmmm, putty brownish unless someone left ice cream out on the counter… then it’s the hue of melted chocolate or strawberry. Again, magic erasers generally scrub out whatever is living in the grout. I hope!

The house needs new carpet that is not only stain resistant (to dogs, children, and grown men), but must vacuum itself. Chronic back problems make that task way too difficult to be done often enough to keep up with dogs, children and grown men. The current carpet is currently a medium brown. I’m a bit fearful to know its original color. Hardwood needs to be dust and scratch resistant (like two dogs who hate nail trims and enjoy running like maniacs through the house scratch resistant).

We also need new windows, but just on the front of the house (we already bucked up on the rest when number one son’s window was literally about to fall into the back yard).

The last and final project is landscaping clean up. This would have to be very special landscaping. It needs to be maintenance free, self-mowing, self-weeding, self-fertilizing and must look fabulous at all times. Automatic poop scooping would be an added bonus. And, the installation of an automatic tennis ball chucker would be amazing.

This isn’t too much to ask is it? I am well aware that this is a “firstworldproblem” and will not feed the poor, end war or fully finance education. But, it might make this supermom feel pretty damn awesome. You see we have three children to send to college in the near future and the money tree in the yard died last year. If we promise our children will be productive members of society who may make world changing discoveries, cure cancer and fight crime will you consider helping us with our list of projects?

DIY show producers, think about what great TV this would make. Suburban neighborhood drama, dogs barking, kids fighting, feet sticking to the floor, and neighbors watching. It could be a ratings blockbuster.

Thank you for your consideration.


The road to Holland is paved with many switchbacks, curves, bumps, hills, and detours…

I have spent the last few years negotiating my way through neuropsych evaluations, psychiatrists, clinical psychologists, therapists, social skills groups, mental health professionals, education professionals, a few occupational therapists, a brief encounter with a vision therapist, tutors, and finally an educational psychologist.

What have I learned?

Well, most of these folks do not take insurance and they are very expensive. That is a much larger problem I am not ready to tackle. I am hoping someday the stigma of mental illness and disabilities will be removed and treated as insurance worthy. We fall into the mildly impacted realm – I cannot imagine how folks in the moderate/severe diagnosis camps can afford to eat.

I have also learned that many of these professionals tend to diagnose based on their specialty. I recall many, many conversations with a psychologist, who was doing research on bipolar disorder, that while my child exhibited some symptoms of depression, he had no manic behaviors. She had bipolar blinders on and didn’t want to hear about my “whole” child. We moved on. It’s ok to question doctors by the way!

We were told early on to enroll in social skills classes (at $130 an hour) to teach social skills. Funny thing… the class was comprised of 10-12 kids with social skills deficits. My overly bright child learned quickly how to play the game, wear his “social skills” hat, and by the end of the ten week session (yes that adds up to $1,300 not covered by insurance) he was literally teaching the class. He still wasn’t asked over for play dates and didn’t give a rat’s ass about kids in his elementary classroom.

Vision therapy?!? Definitely not covered by insurance. Glasses and therapy three times a week for a kid with 20/20 vision was not going to have any significant impact. We had bigger fish to fry. We moved on.

He has sensory processing disorder (SPD). Of course the initial evaluation determined he had mild SPD and would require Occupational Therapy (OT) three days a week. We agreed to one day a week and started brushing, waking up early to administer the “sensory diet” before school, and he wore weights to school (didn’t really help with the play dates popularity). This was covered by insurance except for $70 a session. Not sure if this helped, but he liked his therapist and really enjoyed all the swings and games they played. He seems to have grown out of his mild SPD.

We finally found a very, very good psychiatrist. Some meds helped a lot. She speaks his language and there is a lot of understanding about who he is. We love our psychiatrist.

Our first neuropsych evaluation was done by a private provider to the tune of $2500. Of course, not covered by insurance. It was thorough, thoughtful and very useful – except it offered no diagnosis except (and I paraphrase) “he’s got something going on!”

Six years later we needed a new neuropsych evaluation in order to get ACT accommodations. This time I found a provider who accepted insurance. The report was average. It needed a lot of edits, tons of explanations, clarifications on diagnosis, and removal of tons of “crap” that didn’t apply to my twice exceptional guy. In short, it was a mess. Since he fell into the “PDD-NOS mild” category last time the testing psychologists worked very hard to find a similar diagnosis that would fit the new DSM 5 manual. New diagnosis is ASD mild; however, I believe this is not accurate. I won’t be able to view the actual testing results until I get my degree in clinical psychology with an emphasis/certificate in Autism. YUP. Guess what, I don’t care.

My child doesn’t fit into any neat box. He is a little this, a little that and unless you know him you cannot begin to understand who he is in a 30 page report.

The testing did get us what we wanted. Extra time on the ACT, some new accommodations at school, and the extension of his IEP at his last (THANK GOD) triennial IEP meeting.

What else have I learned this year? The very best professionals, the very best accommodations, the very best tutors and IEP case managers can lead a horse to water – but they can’t make him drink it if he is not yet ready to accept the help.

I’ve learned a calm, compassionate, empathetic parenting style is much more effective with a rigid thinker. Negativity, ultimatums and anger DO NOT WORK! I’ve learned to recognize anxiety, pause and ask how I can help. How can we troubleshoot and solve a problem instead of punishing a behavior.

I’ve learned the road to Holland might actually take a detour through Iceland, Spain and Australia? I’ve learned to step back and let my child make his own choices to succeed now… or maybe research ways to make money programming his Raspberry Pi, master Magic: The Gathering, design a boomilever, grow friendships, and have fun. Maybe figure out school stuff later!?!

I’ve learned to step back, stop micromanaging and let a tutor and case manager do what they do best.

I’ve learned its ok to start slow, maybe local college for a year (or two, three). I’ve given up the dream of Ivy League college because that is not the right place for him anyway. Heck, I’ve given up the idea of a semester of all good grades and the attempt to do what his teachers NEED to be able to create a percentage that translates into a letter grade that never, ever really completely shows what he has learned. He always learns! ALWAYS.

I enjoy my child. I adore my child. I have a good (maybe even a great) relationship with him. He is happy. He has friends who “get” him. He is active in activities that inspire and delight. He seems to want to do better. He will get where he needs to go on his own terms and his own path.

Most importantly, HE IS HAPPY.

………
Welcome to Holland is a great poem for parent’s of children with disabilities… http://www.our-kids.org/archives/Holland.html


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…

Image

 

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.


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