The Results Are In

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I spent yesterday afternoon with the neuropsych going over Cam's testing results. It was a lot of information to take in - some of it expected - some of it catching me completely off guard. The bottom line? Cam has an interesting mix of gifts and challenges - a mix that really doesn't function well in the traditional school environment, nor does it really fit any label.

The most surprising discovery in all of this is the discrepancy between his math/word reading ability and his reading comprehension. Cam is in 8th grade and he is currently performing at "high average" in word reading and math problem solving (grade equivalent of 11.3 and >12.9 respectively) yet his reading comprehension is at a 3.9 grade equivalency. Yes, you read that right - math/word reading ability is at the junior/senior high school level and his reading comprehension is at the 3rd grade level. That's a problem. A big problem that has been rationalized in the past as Cam just being lazy.

The neuropsych also found some "clinically significant" personality profile issues surrounding impulsive hostility, behavioral and emotional dysregulation, attention difficulties, an angry mistrust of others, self-destructive inclinations, and substance-abuse and delinquency proneness. Ummm ... yeah ... that wasn't what I wanted to hear. It's one of those things that you can either view as a ticking time bomb, or as a motivator to reverse the "proneness." I'm attempting to focus on the latter.

There will be readers who claim these personality profile issues are my fault, and it would be foolish for me not to acknowledge the impact of Cam's environment (an environment I put him in) for the last seven years on how his personality has developed. I do feel guilt and responsibility, but getting stuck in those emotions will not benefit Cam.

So, what now? Well, there are some very definite steps that we need to take.

First and foremost is an appropriate educational placement. No one is sure what that is going to look like. Ideally, it will be a private, "therapeutic" day school that the district funds. Based on current state budget issues, I think that will be a hard sell. The question then becomes how do we get Cam in an appropriate educational placement in the "traditional" public school setting. Cam is an odd mixture of intellect and struggle and doesn't fit well into the "traditional" one-size-fits-all model of special education our district offers.

It looks like we are going to have to revisit the med issue as well. Cam stopped taking the Concerta he was prescribed in December and has been med free for almost six months. The recommendation is that he be evaluated for medications that have an appropriate effect on his mood, behavior, learning, sleep and apathy. This is probably the one recommendation I am struggling with the most. This reeks of mental illness - a stigma I would never wish on anyone.

There are also recommendations for continued individual therapy, social skills group therapy and additional "pro-social opportunities" that increase his exposure to diverse settings (read that as he shouldn't be in a small town, farming community where he is one of only two black kids).

Then there is my part:

"Increase structure and responsibility at home to build greater skill in activities of daily living. Incentivize new behavior and skill through positive rewards and reinforcement."

In other words, be a better parent.

I'm trying to take this all in, focusing on the positives while addressing the negatives. I am grateful to finally have some answers, and saddened by some of the answers I received. It's just ... well ... icky ...

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Just Stuff

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I know I do the Random Dozen (randomly), but I haven't done a "traditional" meme in quite some time. I ran into this one over at Still Altering Habits and thought to myself, "Self? That might be kind of fun!"

What's different about this meme? Well, instead of just answering the questions on your blog, you write your answers on a sheet of paper and post a picture of them on your blog. I've talked about the intimacy of a hand-written note/card and how I miss that feeling in electronic media. This is as close as I can get to that on the blog, but it does kind of put a different twist on things, doesn't it?

The questions ...

1) Your name/blog name?

2) Right-handed, left-handed, or ambidextrous?

3) Favorite letters to write?

4) Least favorite letters to write?

5) Write “The quick brown fox jumps over the lazy dog.”

6) Write the following words in capital letters:
- CRAB
- HUMOR
- KALEIDOSCOPE
- PAJAMAS
- GAZILLION

7) Write your favorite song lyric.

8) Tag people!

9) Any special note or picture.

... and the answers ...

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My Dad came across this photo this weekend and posted it on FaceBook. I thought I'd share it with all of you because ... well ... just because!

Funny, when I first looked at the photo I didn't look at me. I noticed the tree on the right - a live Christmas tree from the previous year that we planted in our front yard that spring. And I noticed the Rhododendrons on the left - a flowering shrub my dad bought for my mom on Mother's Day and one that flowered every Mother's Day.

My parents had a rocky, ROCKY marriage - one that impacted my life and my view on relationships in some extremely negative ways. But you know what? When I look at this photo I don't see any of that. Instead, I see the love they shared and the good memories they attempted to create. It makes me smile ...

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Sunday Secret

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Friday Wrap-Up

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I want to thank everyone for the warm welcome back. As you all know, it's been a rough road lately and although there are moments of extreme gratitude, the struggles seem never ending, overwhelming and hopeless much of the time. That said, the time spent away from the blog helped me to see that isolation probably isn't my best coping mechanism.

This weekend, I'm hoping to get back in the swing of reading and commenting on all of your blogs. I am certain that I missed all of you far more than you missed me! *grin*

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A brief update on Cam, school and his educational evaluation.

The neuropsych evaluation was completed last week. I'll be sitting down with the Dr. on Tuesday to discuss the results and where we go from here. It's looking like the Aperger's was likely a "bad" label - leaning more toward the PDD-NOS, ADHD and "gifted" labels (I hate the gifted label more than any other educational label as I truly believe ALL children - ALL people - are "gifted").

I remain frustrated with the fact that Cam currently has no high school placement, yet there are bunches of summer opportunities, with looming deadlines, that I cannot commit him to without placement.

Cam's band director has secured his use of an intermediate oboe assuming he'll track on to his "home" high school. Freshman football camp registration is due in the next few weeks at Cam's "home" high school. Band Camp (again, Cam's "home" high school) registration is due in just four weeks. And all that I can do is sit and wait and hope that we can get a placement for Cam in time, or at least get waivers if we miss critical deadlines.

It's difficult to do nothing even when there is nothing that can be done.

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I attended a special education advocacy seminar last weekend put on by the "premier" special education advocacy/law organization - Wright's Law.

The seminar was titled From Emotions to Advocacy and was filled with useful information and tools. It also brought to my attention that most of what I've been doing has been WRONG. Fortunately, I now have a better understanding of the system - how it works - and how I can work within it to have a better chance of getting the things Cam needs to be successful.

I feel more empowered and I definitely have a much clearer vision of the direction I need to go. Even better? The principles really apply to all parts of life, not just navigating special education, and have the potential to make me a better person all around.

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The one thing I did keep up with during my little blog hiatus was my Project 365 Dana Does Digital blog. Seems photography can be just as therapeutic as writing, and communicating emotions through photos seems a natural substitute when I can't get the words down on "paper."

Here are my favorite photos from this week:

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Enjoy your weekend!

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Random Dozen

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1. What is your favorite sign of Spring?

Leaves ... big, green leaves! Most of the trees in northern Illinois are deciduous. We look at bare, brown branches for about 6 months out of the year. I get so excited when I start to see green again!

In case you are wondering ... no ... there is no green yet.

2. Did you remember to spring forward on March 14? If not, how did it impact your day?

I did, and I hated having to do it! I really wish we'd do away with Daylight savings time, especially now that we are only on "standard" time 4 months out of the year. The time change does little more than wreck havoc on my sleep schedule for the first few weeks.

3. If soil, time, talent and climate were no problem, what vegetable would you plant in a garden this year?

Am I supposed to pick just one? I'd like to grow an entire garden salad! I'd start with the greens: arugula, mizuna, tat soi, frisee, oakleaf, red chard, radicchio, mustard greens, and radicchio. Then I'd throw in some radishes, Vidalia onions, carrots, broccoli and cauliflower. Oh! And some sugar snap peas!

4. If soil, time, talent and climate were no problem, what fruit would you plant?

Apples, lots and lots of apples. Red Delicious, Golden Delicious, Figi, Gala, Granny Smith and Honey Crisp

5. What is your least favorite insect?

I'm not a fan of anything with more than six legs which, by definition, indicates I don't mind insects but have an issue with arthropods - especially spiders, centipedes and silverfish!

Did I get a little too geeky with that answer?

6. March 22 was World Water Day. To celebrate, here are some water questions. Do you drink bottled water? If so, what brand?

I do not drink bottle water, however I will buy it on occasion if I know I have a water drinker coming to visit, and then I usually buy the store/least expensive brand.

7. Have you ever been somewhere that it was not safe to drink the local water? If so, how did you handle that?

There have been several times when I've lived somewhere in the US that had a "Boil Order" in place in which case I boiled the water! There were also a few times while in the Army that I Was somewhere that potable water was not available so we used our handy-dandy water purification kits on whatever water we could find. And no, I can't tell you where those places were or I'd have to kill you!

8. How many glasses of water do you drink per day?

About 2-gallons ... flavored with dark roasted coffee beans *grin*

9. March 24 is the birthday of Harry Houdini. Have you ever watched a professional magic show?

*thinking* *thinking* You know? I don't think I ever have.

10. Have you ever been a participant in a professional magic show (up on stage!)?

That would be a no!

11. March 24 is also the birthday of Steve McQueen and Clyde Barrow. Do you like Westerns or gangster movies? If so, what is your favorite?

I am definitely not a fan of Westerns, which I blame on my father who insisted they were the only "good" movies. I do like a good Gangster movie though; Pulp Fiction, Once upon a time in America, and Scarface are all favorites.

12. (Really random) What U.S. state that you've never visited would you like to visit someday?

There are several, but I think I'd chose Maine first!

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Honesty in Health Care Reform

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Can we talk about health care reform? This isn't an "I'm right and you're wrong" kind of post. The law is what the law is and at this point, much of what people are talking about is little more than speculation, and arguing speculation is pretty darn silly. This is a "Will someone please be honest and give me the 'bad' along with the 'good' instead of blowing sunshine up my ass?" post.

Just so you know where I am coming from, I do believe there is good in the health care reform. The high points?

(1) No lifetime limit on health care coverage

My current insurance has a $5 MIL lifetime cap per person, which is actually pretty high by today's standards, but one serious, long-term health issue could easily chew that up. I hope to never be anywhere near that lifetime cap, but it is good to now know that I don't have to worry about it should circumstances lead me down that path.

(2) "Children" are able to stay on their parents insurance policies up to age 26

I haven't heard what the requirements are for this however most insurance policies currently allow children up to age 22 to remain on their parent's policies as long as they are enrolled in college. This is a great option for parents - giving them the opportunity to continue to help out their kids as they graduate from college and get started out in "real life."

(3) No denial of coverage due to significant health issues

This actually happens throughout the insurance industry because insurance is a numbers game. Have a significant home owner's claim and you might find your insurance dropped. Have too many tickets or accidents and your automobile insurance will likely be dropped. The problem when dealing with this issue in health care is that your treatment options, and quality of care, change measurably when you are dropped from a policy.

(4) Available coverage for those with pre-existing conditions

This was another significant flaw in the system. Denying coverage to those who have the most need for it may make good business sense, but again, it limits treatment options, and quality of care for a great many Americans.

See? I can be objective even though I tend to lean toward fiscally conservative politics! In fact, I'd argue that most people who are feeling angst over health care reform are very much like me ... but you'd never know it by watching the media and monitoring twitter.

My objections are not to providing the things I mentioned above. My objections are to how we are going to do this, the honesty in regards to the cost to each of us, and whether it is fiscally responsible to do so in the ways the law is written.

I keep hearing how this law won't impact my insurance coverage or my taxes - in fact, I can go to this Washington Post link, enter in my data, and "prove" that it won't impact my insurance coverage or my taxes - but in reality, I (and every other American) am being told half-truths.

No, my family income is not above $250,000, so I won't see the Medicare Part A tax rate increased of 0.9% (to 2.35%) nor will I see the entirely new 3.8% tax on unearned income (dividends, interest, etc.), but I can guarantee that I will pay for those tax hikes as they trickle down hill to the cost of goods and services I use every day.

The so called “Cadillac Tax” might get me though. No, I'm not specifically being taxed if my employer offers a health plan that cost more than $10,200 annually for individual coverage, or $27,500 annually for family coverage, but with the tax being 40% of the cost of the plan that exceeds those dollar thresholds, it's a safe bet that I'll see a premium increases should I want to stay with the best coverage my employer has to offer.

Have I mentioned the changes to health care flex spending accounts? Currently, employers set the limit on how much an employee can contribute (pre-tax) to flex spending accounts. The new law caps that contribution to $2500 and excludes reimbursement through flex spending accounts for OTC medicines and (most) medical devices.

If I were a young, single person, this probably wouldn't matter much, but as a "middle income" family of 5, three of whom wear glasses and or contacts, two of whom have chronic health conditions that require frequent (multiple times per month) specialist visits and maintenance medications, and two of whom are actively involved in contact sports that often result in injuries, we easily go through the $5000/year we set aside for flex spending. The $2500 cap costs my family about $700 in tax savings per year.

Some of the other taxes include $16 billion between 2011 and 2019 paid by drug manufacturers (likely resulting in higher prescription drug costs), $47 billion paid by health insurers over the same period (likely resulting in higher premium costs), and a 2.9% excise tax imposed on medical devise manufacturers on the sale of any of their wares beginning Jan. 1, 2013 (likely resulting in higher equipment costs). Oh, and let's not forget the 10% tax on indoor tanning services. Fortunately health care reform didn't tax outdoor tanning services or I'd have to move to Seattle to reduce my costs!

So, the White House really isn't lying when they tell me they aren't going to raise my taxes or change my insurance coverage, but by leading me to believe there will be no financial impact on my family, they aren't being completely honest either.

No, my taxes won't be raised. My insurance coverage won't change. But you damn well better believe I will still pay for health care reform. I'll get less tax savings, I'll pay higher co-pays and deductibles and my insurance rates will likely increase (there is some debate on this one - only time will tell).

In my case I know the cost to my family will be at least $700/year. My educated guess is, when higher costs are figured in, it will be at least twice that amount or at least $100/month. That's a week's worth of groceries for a family of five, and that concerns me.

Does it mean I want to keep children from receiving medical care or that I don't care if poor people die because they can't afford medical insurance? Not in the least. It means that I am doing something as an individual that our government needs to do a lot more of - accept fiscal responsibility for my situation.

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Back In The Swing?

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It happens occasionally more often than I'd like to admit. Usually I can see it coming - the slow train that I have time to prepare for rather than the express that just plows through.

Like so many other things in my life, I have a love-hate relationship with the internet. I've met some great people through blogging, twitter and facebook. I've also run into my fair share of assholes. *shrugs* It's no different than "real" life.

Sometimes, I get a little caught up in the negative. I know ... I know ... some of you are just shaking your head in disbelief (while snickering under your breath). I take what I read far too personally when it has absolutely nothing to do with me. I start feeling envy (of friendships, opportunities and activities), bitterness (how can those people be so popular when they can't write and are complete morons?) and jealousy (I wish they liked me as much as they like [fill in the blank]). I internalize it. It's self destructive and idiotic ... and I know it ... which only makes it worse.

I was starting to fall into the trap - finding myself more snarky and less fun on twitter and when leaving comments on blogs - unable to pull my firmly planted head out of my ass for just a few minutes and act more civilized and less selfish.

Stupid things started to really bother me; how many followers I had lost, how many comments I was getting on posts, what my site stats looked like. I noticed that people I would try to engage in conversation wouldn't respond, and when I reached out I was rejected ... and I made it all about me.

I am competitive by nature, but competitive in ways that people should really never compete in. I compete for attention. I compete for friendships. I compete for love. Unfortunately, there is always someone else who gets more attention, has better friendships or is more loved. I compete in relationships - a competition I will never win - yet I clearly find some vindication in doing so or I would stop.

I know that my nonsense isn't "right," but that doesn't magically give me the skills to fix it. I'm sure it isn't the best coping mechanism, but I usually find a nice, dark place to drink myself into oblivion hide for a while. I drop interactive internet usage "cold turkey" and gather my thoughts, knowing that when I come out from under my rock, I'll be a bit more grounded in reality.

Yeah ... I know ... I never claimed to be normal ...

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Sunday Secret

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Long Walk

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... and there's not much pier left ...


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Friday Wrap-Up (School Version)

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Ahhh ... Friday ...

Today I'll get back to some sort of normalcy, hopefully for quite some time.

Cam heads back to school today. Although his suspension was up Tuesday (he was eligible to return Wednesday) there were some "issues" that needed to be worked through in order to make his return to school a positive one (*crosses fingers*).

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Cam's neuropsych eval continues. This has been an interesting process and will likely change what I think I know. What started out as an estimate of two 3-hour sessions has turned into at least four 3-hour sessions. The process has been following the onion adage - each time a layer is peeled back it becomes clear there are more layers to pull back.

I've had to adjust to the idea that Cam may have a "less glamorous" diagnosis - but hopefully I will soon have the data that will help him most.

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There have been several comments about my being too close to this situation to be most effective in securing an appropriate education for Cam. I do believe there is some truth there, but ... that's as good as it gets right now.

Karen mentioned that she thought advocates might be provided for students at no cost. There is ONE, district "sponsored" advocate that works with Cam's school district (the 6th largest school district in Illinois). ONE. I've been trying to work with her for about a month now, but at this point I can't even get her to return a phone call, my guess is because she is COMPLETELY overwhelmed.

The good news is that Cam's neuropsych goes above and beyond what is "typical" and will be available to present all of the testing data to the school district and will be making MEDICALLY based recommendations for Cam's placement. This is HUGE. Often times a doctor (choose your favorite flavor) makes a diagnosis then sends you on your way. It will be a wonderful advantage to have the doctor who gathered the data present the data - in person - to the school district.

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I mentioned moving to another state this week and yes, I really am serious about this. Part of my frustration with Cam's school experience is a frustration with Illinois' management of education funding - specifically the additional $12,000 Cam's school should be receiving because Cam is on an IEP.

The BBC recently did a story on Illinois financial crisis ... the BBC. I thought I'd share the link for anyone interested. Understand, the district they filmed is near and dear - a suburban/rural district - a district with high property taxes that fund one of the highest per pupil expenditures in the state. This is one of the best districts Illinois has to offer.

BBC News - World News America - Illinois faces budget crisis

Illinois, the state President Obama once called home, is in a 'crisis of epic proportions' according to its Governor. The state is struggling to pay its bills and is considered by some to be on the edge of bankruptcy.

There are obviously problems I cannot fix (yes, I actually am aware of that) and this might be one of them. One of the benefits of states managing education is that I can move to another state that does a better job, and I have almost instant access to school district data via the internet.

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Favorite Dana Does Digital entries this week ...

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A Box of Bullets

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• My life has become a series of disconnected thoughts. Change can do that.

• There are moments when I feel completely overwhelmed and do little more than feed my Bejeweled addiction, watching the clock, waiting for bedtime.

• Other times I see the possibilities are endless - that nothing ties me to this place any longer - and that realization brings on another wave of overwhelming emotions.

• I've been doing TONS of research on schools. It looks like the best "fit" for Cam in this area may be a private school focusing on what they call 2e kids - kids with high IQ's and with learning disabilities. Montessori schools have also been mentioned.

• Anyone bothered by that graphic I used? It kind of bothers me. Odd.
  

• I've also been researching education options outside of the area - specifically in the San Antonio, St. Paul and Seattle areas as I have at least a basic support system (family/friends) in place in those areas.

• I think I've managed to "protect" my job from a legal standpoint. Another Suburban Mom gave me a heads up on Intermittent FMLA (I was familiar with FMLA, but not the intermittent variety) and it's looking like that request will be approved by the end of the week.

• I've been toying with a career change - especially if Cam and I end up moving - involving working with special needs kids.
  

• Insomnia has become my unwelcome friend. My mind feels the need to continue on even when my body is exhausted. Unfortunately, the mind usually wins.
  

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Random Dozen - PLINKO Edition

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I've been quite impressed with the Random Dozen questions week in and week out. This might just end up being a regular Wednesday event here. If nothing else, it's a nice way to break up the week ... well ... at least it is for me!

1. How old is the oldest pair of shoes in your closet?

The oldest pair of shoes in my closet are slippers. UGG slippers that I got free when I had the opportunity - through a former employer - to attend the grand opening of their new boutique store in Chicago. I don't think I'll ever be able to throw them away - they'll likely be the only pair of $100 slippers I'll ever own!

2. Did you buy Girl Scout cookies this year? If so, what variety?

I did buy Girl Scout cookies, and I bought the only two varieties worth having - Thin Mints and Trefoils (Shortbread). I'm a purist that way!

3. Do you know how to ballroom dance? If not, would you like to?

Ummm ... no and hell no! Any questions?

4. Were you a responsible child/teenager?

Define responsible. OK, maybe that answers the question. Growing up in an alcoholic family, you kind of have to be responsible as you are often "forced" to take on adult tasks. I was ultra responsible from the time I was 9 until I was 15. That's when my parents finally divorced and I went a bit off the grid ... so to speak.

5. How many of this year's Oscar-nominated movies did you see?

None. Not a single one. I have not been to the movies in over a year. I'll probably watch Blindside when it becomes a Lifetime movie though!

6. If you're going to have a medical procedure done, such as having blood drawn, is it easier for you to watch someone else having the procedure done or have it done yourself?

Let me have it done and let me watch! Actually, I just want to watch, it doesn't matter who's having the procedure done. Does that make me a voyeur.

7. What is your favorite day of the week and why?

Here we go with the favorites again ... I'm starting to think my lack of favorites might be a commitment issue.

That said, Wednesdays. Why Wednesdays? It's the night I volunteer for the middle school ministry. It's the night I spend with about 300 middle schoolers. It's the one night when I feel like Cam and I really matter and are loved. That is a good feeling.

8. Do you miss anyone right now?

I do. I miss several people very, very much and am trying to come up with a plan and a timeline to get closer to at least a few of them.

9. Do hospitals make you queasy?

Not at all. I find hospitals fascinating!

10. At which store would you like to max-out your credit card. Not that you ever would, you responsible person, you.

Hmmmm ... Home Depot or Lowes. I'm not materialistic at all, but if I could make my home more comfortable and welcoming for my family, it would be worth maxing out a credit card.

11. Are you true to the brand names of products/items?

I'm brand loyal on very few things. In fact, I can think of only one item I won't deviate on - Kraft Macaroni & Cheese. The blue box is sacred.

12. Which is more difficult: looking into someone’s eyes when you are telling someone how you feel, or looking into someone’s eyes when he/she is telling you how he/she feels?

Looking into someone eyes ... period! I have to struggle to maintain eye contact. It's as if I've got metallic flakes in my eyeballs and a giant magnet attached to the top of my feet. OK, that was a little weird, but you know what I mean.

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Invisible, Not Imaginary

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Invisible disabilities make up 10% of the disabled population yet since they can't be seen, they are easily dismissed as imaginary.

Invisible disabilities include autoimmune disabilities (lupus, rheumatoid arthritis, crohn's disease), chronic pain disabilities (fibromyalgia, temporomandibular joint (TMJ) disorder), dietary disabilities (celiac disease, diabetes, irritable bowel syndrome), psychiatric disabilities (major depression, bipolar disorder, anxiety disorders) and my favorite, neurological disabilities (multiple sclerosis, ADHD, asperger syndrome).

Invisible disabilities are no less debilitating than spina bifida or blindness, but because we aren't alerted to them by a wheel chair or a guide dog, they are taken less seriously. People are accused of making them up.

I hear it often. In fact, I listened to it for the last seven years. There was an abundance of it in the comments of my Friday Wrap-Up (Angry Version). And I constantly hear it from teachers. I am enabling Cam to be the way he is. If I were disciplining him at home he wouldn't need to be disciplined in school. If he would just work up to his potential, there wouldn't be a problem. If I'd quit catering to him and set my foot down he'd quit manipulating everyone. As a parent of a child with an invisible disability, I am often blamed for Cam's difficulties. I am an easy target.

It's devastating to be "forced" to listen to these comments. I know Cam has an invisible disability - just as clearly as I know that spring follows winter - yet when everything seems to start going better, a crisis erupts and Cam and I are blamed.

I understand the frustration of the school and of some of my readers. I really do. I am frustrated too. Cam has gotten to the point where he has completely shut down in class. Homework is a nightmare. Cam's Aspergers and ADHD make even the most simple organizing overwhelming. I understand this, but I can't seem to get his teachers and other adults to understand this.

I am often overwhelmed. All of my hard-learned, carefully researched and professionally-based explanations of the things I know about Cam are perceived as excuses. When I try to relay to others what I've learned, it's viewed as "enabling."

Am I an enabler? No. I know Cam's strengths and weaknesses and I step in and defend him when needed. I am his advocate. This isn't the same as buying beer for an alcoholic or driving the drug addict to her dealers house. The school's stance has been that he should do everything by himself, no matter the struggle, the frustration or the amount of time it takes. This is no different that requiring a child in a wheelchair to participate in a regular PE class, and I can't imagine a single person thinking that was reasonable.

Cam needs a strong advocate. Someone who will stand up for him, be assertive and deal with school issues and personnel in a way that gives him an equal opportunity to become a successful student, a student who learns what his mind is capable of learning rather than being held back by his neurological differences.

Unfortunately, his teachers think I'm too involved. They (and probably a handful of my readers) believe I am an enabler. It is simply easier to blame me, or Cam, than it is for those people to think and do things differently.

I have a responsibility to Cam. Unfortunately, in today's school culture that requires accountability for production and quality of work, I am made to feel I shouldn't step in and help, that Cam must somehow find academic success with no assistance, no advocacy, no voice for his needs. I am seen as overprotective. I am made to feel that if I stand up for Cam, my actions are the reason he is having problems.

I struggle to teach Cam the skills he needs to be independent. Why would I work so hard otherwise? It's not fun. I don't get any joy from it. I don't get any personal recognition for the incredible extra efforts it takes to help Cam find academic success and coping skills. There isn't a paycheck involved, in fact - on average - I spend $160/month on medical co-pays related to Cam's disability. No one pats me on the back and tells me to keep up the good work, least of all Cam. He is convinced I am the most evil parent in the world and frequently talks about how wonderful his life will be when he leaves. It is my responsibility to make sure he can leave.

I work diligently to guarantee Cam's ultimate independence and good mental health. I'm not coddling him by smoothing the rocky path while we try to find ways to manage the obstacles. I am making sure the playing field is level so that he'll WANT to play and not give up completely in discouragement.

I understand why teachers want Cam to be responsible and productive. I do too! But often their solution is detention or failure. This is the easiest, most economical, one-size-fits-all solution that really doesn't fit all students and is often damaging to students with disabilities.

Studies show that countries like Sweden and Japan who show juvenile offenders care and nurturing have a much lower rate of recidivism than countries who use humiliation and punishment. Schools that show children care and nurturing also produce far less angry students, less dropouts and more successes than schools that dole out punishment or detention.

It requires a different way of thinking, and change is hard - if not impossible - in the public school system.

I really should have as much of a voice in Cam's schooling as the school does, and I shouldn't have to be afraid of being labeled the cause of Cam's disability. I didn't parent him into Aspergers and ADHD and I won't be able to parent him out of them either, but given the right tools, I can help teach him the coping mechanisms he needs to be successful.

He may have an invisible disability, but it isn't an imaginary disability.

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Sunday Secret

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Friday Wrap-Up (Angry Version)

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I follow Cam's school district on Twitter. Yesterday afternoon this tweet came across:

We must unfortunately consider releasing teachers at Monday's Board meeting as the state considers chopping funds

Is it bad that my first thought was, "I've got one in particular I'd like to nominate!"

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I've had several people ask me if I'm OK. I always wonder how it is I am supposed to answer that inquiry. I mean, I know they are genuinely concerned, but what I want to say (and have said to at least one person) is:

No ... I'm not OK ...

My son made a threat against a school - a school that seems to be systematically attempting to accomplish an agenda that is better for them without any concern as to the well being of my son!

I want to hire an attorney but I can't afford the retainer for one and can't seem to find one who is willing to work for free.

My job is now on the line because the stress of my personal life is starting to negatively impact my job performance.

I thought I had already "lost" everything and yet now I'm finding that there is even more to lose and that no matter how hard I hold on, it continues to slip through my fingers.

And I feel like I am completely and totally alone in this. Sure, I can lean on you guys for emotional support, and I don't know where I would be without that, but at the end of the day I walk into a very empty house.

No ... I'm not OK ...

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This week has been filled with reality check moments - finally coming to grips with some of the more negative realities of my life. One of those moments came yesterday when dlk24 made he following comment on my post:

[I would] pack it in, quit my job and move me and my child to a place where I would have emotional support

That sounds so good right now ... if I had a place to go where I would have emotional support. But the reality is that I don't. Neither my mother nor my father are emotionally balanced enough to offer emotional support. Moving near them opens the doors for an even more dysfunctional environment.

No one in my community has any interest in being there for emotional support. I've got the kid who threatened to blow up their little snowflake's middle school. They need to be protected from the evils of children like Cam, not be there for support. I'm more likely to find a bucket of tar and a bag of feathers on my doorstep than I am a "friend" in my community.

Church? Much the same way. The more issues Cam has at school, the worse his behavior becomes at church. He's been kicked out of small group the last two weeks for behavior issues. Last Wednesday he said, "I'm just a bad kid. I can't do anything right. Not at school. Not at church. It's just who I am."

So someone please tell me where that utopia of support is OK? 'Cause when I look around to all of the places it should be, I see a lot of closed doors, not open arms.

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This week's favorite Dana Does Digital photos ...

NOTE: I have disabled any further comments on this post.

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Three Stikes

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The caller ID showed the call was coming from the middle school. My heart started beating a little faster and I hesitated before picking it up. These aren't usually good calls.

"Dana, I need you to come to my office now."

It was the principal. No explanation. No indication of what happened. Just the demand.

The school is just minutes from where I work. In fact, It probably takes me longer to shut down my computer system and get to my car than it takes to actually drive to the school. When I rounded the corner, I half expected to see at least one squad car in the parking lot. I knew this was serious - I had never received a call quite like that one.

No police in the parking lot. Whew! I start thinking I may have over-reacted or misread the phone call. Maybe ...

... or not. After talking to the principal for a bit (Cam was beyond frustrated and had COMPLETELY shut down. When I walked in the door he was curled up in a chair with his sweatshirt drawn up completely over his head) I learned that Cam had made a threat against the school. This wasn't just bad, this was really bad.

This week the entire school is participating in the Illinois Standard Achievement Tests (ISATs). This is a BIG deal - not for the kids (although the school certainly positions it that way) but for the school. ISATs are how the government determines if a school is making adequate yearly progress (AYP). Cam's school did not make AYP last year.

All of the IEP and 504 kids are segregated during ISATs. They are placed in a room monitored solely by SpecEd staff. The teacher's own written representation of the events indicates she escalated the situation, but Cam's response was completely inappropriate.

All classes in Cam's middle school operate on a three strike rule. Any time any child is acting up they are given a verbal warning explaining what the unacceptable behavior is and told, "This is strike one." If another event occurs, the same process is repeated ending in "This is strike two." If there is a third occurrence, it becomes strike three and the student is sent from the classroom to the office.

According to both Cam and the SpecEd teacher, Cam was talking in class and given strike one. According to the teacher, Cam was given several "cues" that should have (the favorite phrase of the school) indicated he was receiving strike two, however she never said "strike two," instead she demanded Cam leave the room immediately.

Now, for a neuro-typical kid, this wouldn't be an issue. Sure, the student would complain it was unfair and might even say, "This isn't fair" before walking out of the class and heading to the office. For a kid on the autism spectrum this is melt-down material ... and that is EXACTLY what happened.

I don't want this to sound like I am absolving Cam of any responsibility for what happened. Cam chose the words (something along the lines of "If I had guns and detonation packs, this school would be gone") and the words were completely unacceptable. Thinking them is one thing - professing them to a class full of 8th graders is beyond unacceptable.

That said, there is absolutely no reason this situation should have gotten to where it did. The SpecEd teacher handled it completely wrong for a spectrum kid - in fact, for any kid. She changed the rules without letting Cam know (strike one), she engaged Cam in an argument in front of his peers (strike two) and she criticized him publicly (strike three - you're outa here).

Of course, there is a policy in place for this type of threat. We live in a society where kids don't just say these things, they do them. This is a place where zero tolerance really does make sense and I knew the punishment would be serious - possibly expel-able.

The principal brought in the school social worker who explained the process. Cam would need to complete a "risk of harm" evaluation at one of two behavioral health units in the area. The school district would cover the cost of the "risk of harm" evaluation, however I would need to cover any treatment recommended.

She gave me the paperwork and sent us on our way. At this point, I had no idea what the repercussions would be for Cam. Would this be a suspension or would he be expelled from school?

We spent four hours at the assessment. They determined Cam did not pose an imminent threat to himself or to others. They recommended the following:

FOLLOW UP WITH YOUR SCHEDULED APPOINTMENT FOR THE NEUROPSYCH (I scheduled this appointment weeks ago) ON 3/8. FOLLOW UP WITH OUTPATIENT COUNSELING AS WELL AS A MEDICATION EVALUATION WITH A PSYCHIATRIST.

The good news is their recommendation is exactly what I was already doing - what the school knew I was doing - and the assessor indicated she was certain this was a frustrated reaction to a situational event, not an indication of a planned assault on the school.

Yesterday I learned Cam's "official" school punishment is a 10-day suspension, reduced to 5 days after completion of the "risk of harm" assessment.

I talked to my employer yesterday and they are allowing me to work 1/2 days (8:30 - 12:30) through the end of next week, taking "unplanned" vacation for the other 4 hours (company policy is we can take vacation only in 8-hour increments and must give 2-weeks notice of intent to take vacation).

My greatest concern now is sending Cam back to school next Wednesday - not because I am concerned about the safety of others in the school (for the record, Cam does not have access to guns or a detonation pack - I even searched his room to be certain), but because I am concerned about Cam's safety.

I need to find out what my options are - if there is any way I can get Cam through the 8th grade without subjecting him to what really has become a "hostile" learning environment. I don't want to send him back. I believe Cam's current school environment is increasing his behavioral issues. It's a mess for everyone.

WWBD (What would bloggers do)?

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Random Dozen

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I had a rough night last night (more on that later) so today I'm going with the no-brainer post!


1. Do you prefer even or odd numbers? Any particular reason?

Really? I cannot believe this is a Random Dozen question! Didn't I just talk about this Friday?

Speaking of Friday, who is the unloyal reader smartass who unfollowed me on Friday - leaving 99 followers - after reading my rantings about having an even number of followers?? Huh?? Huh?? Don't make me search through the ISP list and find you! Fess up!

Yeah ... so ... even numbers RULE!

2. On a scale of 1-10, with 1 being "not at all" and 10 being Carly Simon-worthy, how vain are you?

I would be a -5. I am many things, vain is not one of them ... most likely because I grew up with a mother who thought leaving the house without makeup was akin to clubbing baby seals.

3. Among these Irish stereotypes, with which do you identify most closely? Talkative, Proud, Inquisitive, Love to party, Hot-tempered

Hmmm ... I'd probably have to go with inquisitive, but none of those jump out and bite me in the ass. Rumor has it there is a splash of Irish in my German blood, but I'm thinking it must be more like a drop. That or the damn Nazi blood has committed a blitzkrieg on the potato farmers.

4. How lucky do you consider yourself?

Lucky? Is anyone really lucky? I tend to think more along the lines of you get what you deserve, and I obviously pissed off the karma fairies.

5. What is the subject of your favorite post that you've written?

I don't have a favorite post that I've written ... is that weird?

6. Describe March weather where you live in three words.

Winter isn't over.

7. How apt are you at detecting blarney when you hear it? (Smooth talk, flattery)

Those of us with a cynical bend tend to be over-achievers in detecting blarney when we hear it. In fact, I'd go so far as to say that my cynical bend is a least 90 degrees thus causing me to err on the side of "that's blarney" when anyone says anything nice.

8. How "green" are you, environmentally speaking?

Mint green. I recycle (usually) cans, glass and paper. I take packaging into consideration when making purchases. I occasionally remember to bring my reusable bags to the market. I could do better, but I'm waiting for the kelly green folks to make it easier.

9. What is your favorite song this week?

Favorite? Again? I don't usually have favorites in anything. Great ... now I'm starting to get a complex because I don't have favorites!

10. You are walking along and see a coin on the ground. What denomination does it have to be before you will stop to pick it up?

It depends on which day of the week it is. Payday is Thursday, so if it's Tuesday I'll pick up a dime. Saturday? It's got to be a quarter - I do laundry on Sunday!

11. Complete the sentence: "Every time I look outside my window ...."

... I examine the ground to see if Jay has left any footprints.

12. What was the #1 song on the day you were born? See this site to find out.

Rag Doll - The Four Seasons. Egads I'm old ...

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When Food Comes From Angels

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Last week I talked about food - specifically the crappy job we do in getting food to the people who need it - the hoops we make people jump through when they are already at a low point in their life. I also mentioned my hope that Angel Food Ministries - a non-profit, non-denominational organization dedicated to providing food relief and financial support to communities throughout the United States - might fill that food gap for people like me.

I picked up my first Signature Box on Saturday. The Signature Box contains fresh and frozen foods valued at $60, for only $30 per box. Angel Food Ministries uses their national buying power, and minimal overhead expenses, to fill the food gap.

This was the contents of my Signature Box ...

Now, just in case you can't see everything, let me give you a full list of what I was able to purchase for $30:

2 lb. Top Sirloin Steaks (4 x 8 oz.)

1.5 lb. Boneless Pork Roast

2 lb. Boneless/Skinless Chicken Breast

2 lb. Lasagna with Meat Sauce

1.5 lb. Fully Cooked Boneless Chicken Drumsticks

1 lb. Lean Ground Beef

1 lb. Frozen Baby Limas

1 lb. Frozen Green Beans

1 lb. Frozen Broccoli

1 lb. Pasta

1 lb. White Rice

25 oz. Pasta Sauce

3 lbs. Potatoes

1 lb. Carrots

32 oz. 2% Shelf Stable Milk

Dozen Eggs

1 Pumpkin Pie

Not only was the food high quality (there really were no second-hand items, no damaged or out-dated goods, no dented cans without labels, no day-old breads and no produce that was almost too ripe) but I was treated with the utmost dignity and respect.

I walked into a "casual" part of the church (looked like a small gymnasium) where I was greeted by an "appropriately" friendly woman. She had me initial my order and got me started on the pick-up process. A trip around a series of tables with a laundry basket and I moved over to the packaging area where two more people loaded my groceries into two eco-friendly reusable bags, and I was on my way.

Everyone I came in contact with treated me as if I were their neighbor. There were no high-pressure God sales. In fact, the only "religious" component of the program was the pick-up at a church and the flier left in the bottom of one of the bags.

This program is EXACTLY what I needed and the kind of program I feel really meets the needs of many in our country. It allowed me the dignity to purchase (they also accept SNAP - food stamps - to purchase items) good quality, healthy food for my family at a reasonable cost. There are no qualifications, minimums, income restrictions, or applications. There are no embarrassing "client interviews." This program allows you to walk in with your head held high, and walk out in the same manner.

Life sometimes brings us unexpected circumstances, and during those times it's not a hand out we need, but a reasonable help up. Angel Food Ministries has managed to find that balance.

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Happy Birthday Boo-Bear!

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Today my Boo-Bear turns 14. It's been a rough year for him and my greatest hope is that this coming year, he'll have the opportunity to focus on being 14 and not have his mind and heart clouded by all of the nonsense he's had to deal with in the past.

In honor of Cam's birthday, I'd like to share with all of you 14 things you might not know about him.
*EDIT* Updates at 16 are in BOLD italics

1. Cam was a 9 lb-12 oz, 24 inch baby. Throughout his first two years his pediatrician kept telling me his growth would slow down. It never did. As of yesterday, Cam is 6'-2", 220 lbs ... and STILL growing.
*EDIT* At 16, he is 6'-4" and 270 lbs

2. At 3, Cam would walk through parking lots and name (correctly) the make and model of every car. This is still one of his favorite road trip games. It's not unusual to hear hours of "Toyota Carola, Ford Focus, Dodge Challenger ..." while in the car.

3. When Cam was 4, he rode his bike to a park 2 miles from our house ... alone. I was in a panic and called the police. When they found him at the park they explained that I was worried about him because he was lost. His response? "I'm not lost! I know exactly where I am!" This was a hint of things to come.

4. Cam has attended 5 different schools since kindergarten. He has been in his current school 3 years - the longest stretch he's ever been in any one school.
*EDIT* He is currently on his 7th (and hopefully last) school

5. Cam plays the oboe and has for 4 years. Oboe was his first choice in musical instruments when band was offered in fifth grade, but oboe was not the first instrument he learned to play. He started playing piano (by ear) at 4 and is also a self-taught guitar player.
*EDIT* Cam continues to play the oboe (6 years now), plays the bass drum in marching band and has a new musical love, the bass guitar

6. Cam has hundreds of Hot Wheels. Although he did it much more when he was younger, he will still spend hours lining the Hot Wheels up from end to end and from one end of the house to the other.

7. Cam always sticks up for the underdog and God help you if you say something - or do something - against one of his family members or "friends"

8. Cam's best subject in school is math, but his favorite subject is Social Studies.

9. Cam orders only one meal from each of the fast food restaurants we go to. A #1 (Big Mac) with extra onions, large fries and large Hi-C Orange if we are at McDonald's, or a Steak Grilled Stuff Burrito and a large Mountain Dew if we go to Taco Bell. He won't order anything but a drink if he is "forced" to go to any other fast food restaurant.

10. Cam's iPod contains every genre of music, from classical to hip-hop and everything in between.

11. Cam has spent more time in the Principal's office for being honest than he has for any other reason. It is not unusual for a teacher to ask him, "Would you like to read these pages, out loud, to the class?" only to have Cam respond, "No" (he doesn't have social filters). This then turns into a trip to the Principal's office for defiance/disobedience.

12. Cam's favorite color is orange and he prefers orange clothes, orange cars, and orange food.

13. Cam is still upset with me for lying about Santa Clause, the Easter Bunny and the Tooth Fairy ... very upset!

14. Cam is an amazing kid with amazing talents, unfortunately most people see his behaviors (autism) before they see him. My hope for him, and for other kids like him, is that this will not always be the case.

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