IEP parent

It's that time again!  Once a year, I meet with Joshua's team of therapists and teachers at school to review his Individualized Education Plan (IEP).  An IEP is the paperwork that describes what services Joshua gets from the school district and what goals he will be working on for the upcoming year.

One of the lucky things about my first two jobs is that they provided me with some helpful training for my life as a special needs parent.  In my first job, I learned how to make health insurance appeals.  In my second job, I had a handful of clients in Early Intervention and dozens of clients with IEPs, so I got to learn all about how those systems work before I had to start advocating on behalf of my own child.  (In fact, with Early Intervention, this led to some confusion -- when I called to get Joshua enrolled at age one month, I still had some messages pending for my clients, and the manager called back confused about whether attorney Erin and mom Erin were the same person, and in what capacity I was calling for Joshua.  And her tone totally changed once she realized I was calling for my own child -- you get much friendlier treatment and much greater access when you're the parent rather than the attorney.  But I digress.)

For the clients with IEPs, we sat in on their meetings, reviewed the documents, and were available to help challenge if it came to that (although with my clients I never actually did a due process hearing).  So I am very comfortable with the process itself, although it feels completely different as the parent rather than as one of the service providers.  It's much more emotional and stressful when the discussion involves your own kid and the areas where he is delayed.  And because IEPs read in some parts like legalese and in other parts like a robot spitting out a formula, it can feel like the school district is dealing with your child mechanically rather than thoughtfully, compassionately, and individually.  If I ever do go back to a job where I'm an attorney in IEP meetings, it will be invaluable to have seen what it feels like to be the parent.

In the process of attending IEP meetings, here are the best tips I've learned that apply universally:

1.  You can request your papers ahead of time.  This is helpful for a few reasons:  it lets you read about your child's strengths and weaknesses privately and lets you feel whatever emotions that might bring without an audience; it lets you read the services and goals in a concentrated way, without having to keep half your brain tuned to what's happening in the meeting while you're trying to read; and most importantly, it lets you know any areas where there are disagreement and lets you think about how to prepare for that.

2.  You are allowed to bring support people with you.  Many states have non-profits with free trained advocates who will go with you.  These people know the process and the paperwork and your rights backwards and forwards, and they can talk to you about what your goals are for your child and then help you fight for that.  You might also bring a trusted relative or friend, even if they don't know a thing about IEPs, so that you feel emotionally supported.

3.  The things to really focus on in the IEP are placement, services, accommodations, and goals.
I have re-written this paragraph three times and can't quite seem to get it right - there's too much to say and it's too specific to individual situations.  But here are 3 places where you might need to prepare for disagreement:  1) whether your child qualifies for an IEP in the first place;  2) what is the least restrictive and most appropriate placement for your child (particularly if there are behavioral issues that negatively impact the other students in the classroom); and 3) getting a really expensive service in place (like one-on-one nursing care).  (It's beyond the scope of this blog post, and for that matter my "expertise", to go into strategies about how to deal with these things.)  Goals are usually much easier to negotiate, but still important to think about carefully, as they will structure what is pushed in your child's learning (so in a way, they function like school testing).  Discussions about goals are also a good chance to have a back and forth conversation about what you can do at home to complement what they are doing at school to help your child meet his goals.

4.  Know that you have rights to challenge.  If you didn't get to ask for something at the meeting, or you didn't have a chance to bring in supporting paperwork, or something new comes up -- you can ask for a new IEP meeting at any time.  You don't have to wait the full year.  If you did get to make your requests but the team did not agree to them, you have the right to challenge at a due process hearing.  You don't have to understand how this works going into the IEP meeting - just know that if you weren't happy with how things went, that doesn't have to be the end of it.

5.  Remember that it's a balance -- you're the best advocate for your child, but the other members of the team also want the best for your child.    No one knows your child or cares about your child as much as you do, so you should come in prepared to advocate hard. On the other hand, the other members of your team (therapists, teachers, etc.) got into their field because they care about kids, and they want to see your kid succeed.  They might say no to some of your requests because they have to think about competing needs (like limited school budgets, the needs of the other kids in the classroom, complying with the rules, etc.), and that's why it's so important for you to advocate hard - but it's also good to remember that these team members spend the whole school year caring for your kid, and it's good to give them respect and appreciation for that.  Mostly because they deserve it, but also because building a good relationship with your child's team will be beneficial to your child.

That's the end of my tips.  Having said all that - we have had a very good experience so far with Joshua's team.  We (parents and school team) are mostly in agreement about services and goals, and when we have minor disagreements, the school has been very responsive to our concerns.

So I know I have some other friends who are / were also IEP parents, and also some teacher / therapist friends....I would love to have you share your wisdom & tips on this subject.

Surgery & Genetics

A month ago, I wrote a blog about some upcoming health stuff happening with Joshua.  Here are the updates:

Surgery - the actual procedures (ear tubes and dental work) went well; the day itself was pretty hard on J.  This is the first surgery he's had in 2 years (after 9 in his first 18 months), and it definitely changes the dynamic when kids are old enough to understand what's going on.  I don't know if it's entirely worse, though:  there was an idea floating around when he was getting all the surgeries done as an infant that at least he wouldn't understand / remember them -- in some ways this is worse, because there's not a clear distinction for the baby between things that cause pain and things that offer safety & comfort.  Now when he gets surgery, he is old enough to understand that it's scary when he's walking back with the anesthesiologist and scary when he's waking up feeling disoriented and in pain, but he also knows that when we head home, he's going to a safe place and the procedure is over.   I think it boils down to this:  surgery is always hard, and there are both new pros and new cons as kids get older and more aware of what's going on.  As far as surgeries go, this was a minor one and there were no post-surgical complications, so we're glad for that, glad to be moving past it, and glad that there are no upcoming surgeries on the books!

Genetics appointment - Yesterday, J had a genetics appointment.  He had previously seen a geneticist when he was 1 week old and 9 months old, both times in Utah, and they determined that he did not have either of the two syndromes most commonly associated with Pierre Robin Sequence.  However, there are a bunch of less common syndromes / chromosomal abnormalities that are associated with PRS, and Josh has a few features that make it seem possible that he has an undiagnosed underlying syndrome.  (Most notably, a pinky finger that won't bend and overlapping toes.)  The geneticist did two things that made me very happy:  1) She said that she thinks Joshua is doing great overall (as far as health, development, etc.), so there's probably nothing to worry about.  (We think so too, but it's always super reassuring to hear it from a doctor.)  2) She ordered a microarray, which will test for any chromosomal deletions or duplications.  It's always helpful to have more information rather than less, so if it turns out he does have something chromosomal going on, we will better know what health issues to monitor.  And if not - great!  Either way, it will be good to know.  So it turns out that it is true (at least in our small sample size of one each) that West Coast geneticists do rely on physical examination and East Coast geneticists do rely on testing.  They already gathered J's DNA using a cheek swab, and we should have the results in about 6 weeks.

That's all the updates for now!  Will post again when we get the results of the microarray.

Annie Dillard

Earlier this year, I read Annie Dillard's "Pilgrim at Tinker Creek", which is a Pulitzer Prize winning non-fiction book of reflections on nature with some philosophy, biology, and theology thrown into the mix.  This is very much NOT the kind of book that I normally read and it took some effort to get all the way through, but it was well worth the effort as it's the kind of book that lingers with you for months.  It could inspire all kinds of discussions, but for this blog post, I'll do two:  

1.  What is art?

The best kind of art shows rather than tells.  (Credit to Kenny for this idea.)  There are plenty of articles telling me that I should slow down, stop and smell the roses, unplug from technology, and spend time in nature.  I agree with these sentiments, but when you are just told to spend more time in nature, it feels like one more item on the to-do list.

What Dillard does, and what makes her writing true art, is she shows you examples of things in nature that are beautiful, or startling, or surprising -- and all of this makes you want to get outside and see an example of the thing she's talking about.  One example:  Eels  (yes, the snake-like sea creatures) sometimes migrate across meadows!  Check out this description:  "Imagine a chilly night and a meadow; balls of dew droop from the curved blades of grass.  All right:  the grass at the edge of the meadow begins to tremble and sway.  Here come the eels.  The largest are five feet long.  All are silver.  They stream into the meadow, sift between grasses and clover, veer from your path.  There are too may to count.  All you see is a silver slither, like twisted ropes of water falling roughly, a one-way milling and mingling over the meadow and slide to the creek.  Silver eels in the night:  a barely-made-out seething as far as you can squint, a squirming, jostling torrent of silver eels in the grass."  How crazy would it be to see that sight??

"Pilgrim" is full of examples like this, facts about nature that make me pay close attention to what's around me as I'm in the backyard or out for a walk.  I'm not paying attention to nature because some HuffPost article told me it would be good for me; I'm paying attention because Annie Dillard showed me examples of things that would be amazing to observe.

-------------
2.  I believe that God is eventually going to restore the earth to perfection - what will nature look like then?


A key part of my Christian beliefs is that, in the future, God is going to create a new earth, and that it will be perfect.  So in some ways it will be like what we have now - we will inhabit physical bodies, live in a real physical time and space where we can see and touch and taste, and still co-exist with nature and with other human beings.  But in more important ways, it will be nothing like what we have now, because all the bad things will be gone.  Our bodies will not be subject to health problems of any kind and they will not experience decay and death.  No more war, school shootings, poverty.  No more famine, tsunamis, earthquakes.  No more brokenness in relationships, abuse, abandonment.  No more of me acting in ways that are selfish, lazy, prideful, narcissistic, cowardly.

Going back to the book, Dillard describes in great detail how very brutal nature can be.  I tend to think of nature in a much more cartoonish, Bob Ross type way - beautiful mountain vistas, birds singing their songs to each other, turtles lazing in the sun.  Dillard talks about these kinds of things a little bit, but she spends much more time describing animal species that eat eat their own young, or purposefully abandon their newborns, or eat their mates.  She points out that 10% of the world's species are parisitic and ponders what it's like to live as a parasite (or as the host of a parasite).  It's a kill or be killed world for animals, from the most microscopic insects to the carnivores at the top of the food chain.

So my question is:  what will nature look like when the world is restored to perfection?  Will the parasitic species cease to exist?  Will there even be such a thing as a carnivore?  Will praying mantises no longer eat their mates?  Will poisonous animals no longer be poisonous?  I don't think we can answer any of these questions, but it's interesting to think about.

The New Jim Crow

I just read The New Jim Crow: Mass Incarceration in the Age of Colorblindness,.  The author, Michelle Alexander, argues that  mass incarceration, and specifically the War on Drugs, has created a system that looks much like the old Jim Crow laws.  I approached the book with skepticism, thinking that although there is certainly some racial discrimination and disproportionately harsh effect on African American males in the criminal justice system, there's no WAY it's anything like Jim Crow - and I was astounded to see how powerfully she made her case.

The argument in brief is this:  Drug laws became much harsher in the early 1980s, and following that, drug convictions caused the prison population to explode.  Most of the people (around 90%) being arrested for drug crimes are black or brown, even though studies have shown that black and white people use and sell illegal drugs at the same rates.  At every stage of the criminal justice system - who gets stopped, who gets searched, who gets arrested, who gets better plea bargains and less severe charges, who gets tried in state v. federal court, who fares better in jury trials, etc. - black males receive dramatically harsher treatment than other groups.  A significant percentage of black males end up spending time in prison or on probation or parole for felony drug crimes (unlike other groups, and despite the fact that they are using and selling at the same rate as other groups).  Once you are labeled a felon, you automatically lose rights or face discrimination in a whole host of areas - voting, housing (both public and private), employment and professional licensing, educational loans, and public benefits - and it becomes really difficult to survive, let alone thrive, in mainstream society.  Often, this loss of rights hinders you for your entire life.  Because mass incarceration followed by loss of rights mostly affects African American men, it affects them in large numbers, and it affects them for their whole life, it creates a social order that looks a lot like the social order in the days of the Jim Crow laws.

At this point, it's important to acknowledge what I felt like was the major flaw in Alexander's argument:  the people who are subject to mass incarceration have violated a race neutral criminal law, and this is a *significant* difference from the Jim Crow laws that applied to all African Americans and no one else.  It might be because I was born in the 1980s and was fully indoctrinated into the War on Drugs rhetoric, but I think you can't just toss out drug laws.  Drugs wreak havoc in our society:  they cause collateral crimes of violence and theft, they destroy the lives of addicts, and they contribute to the abuse and neglect of children. It may be true that major reform is needed at every level of the system, but you can't just abolish drug laws, and you can't just forget that people have violated drug laws that are serving a legitimate purpose.

But putting that very significant issue aside, this book paints a vivid picture of how difficult every aspect of your life becomes once you are branded a felon, and it raises a whole host of issues, such as:

• What is the War on Drugs accomplishing, and specifically, is it accomplishing the goal of reducing drug use and drug related crime?
• Are prisons the best place to load up the dollars, or could the drug problem be addressed more humanely, effectively, and economically by focusing on education and treatment programs? 
• If mass incarceration is the appropriate solution to the drug problem, and if drugs are used and sold at equal rates by African Americans and Caucasians, then how do we get more of the white users and dealers convicted and incarcerated?    
• How do we create more fair treatment of African Americans at all levels of the criminal justice system?  And in portrayals of the criminal justice system by the media?  
• Why do we have mandatory minimum sentences on drug crimes?  Why can't we give judges the discretion to impose a harsh sentence where appropriate and a more lenient sentence where appropriate?  
• What is accomplished by not allowing felons or ex-felons the right to vote?
• Can we find a way to more narrowly tailor the restrictions ex-felons face, particularly in employment and housing?  Or come up with some separate program to support ex-felons as they re-enter society, so that they don't turn back to a life of crime because all the employment and housing doors are closed in mainstream society?  

If these ideas spark your interest - whether they strike you as right or wrong - then I would really suggest you read the book.  I have just skimmed the briefest surface in this post.  I don't fully buy into Alexander's thesis, but I learned a lot from this book and would highly recommend it.