Sunday, February 26, 2012

The Agony of Defeat

This week, my husband and I had an IEP meeting for K at the school.  In attendance was the usual team - the classroom teacher, the resource specialist, the principal, the speech therapist, me and my husband.  The program specialist - our assigned representative from the district - was not there due to illness.  He did, however, lament the fact that not only was he missing the meeting, but he'd be missing out on my cookies.  Hooray for Suck-Up Cookies!

We were well prepared for this meeting.  I had completely reviewed our most current IEP, made notes, made a list of questions, documented our evidence to support any requests we wanted to make.  We felt confident of K's progress over the last year, but we always know there will be some sort of bump in the road, if for no other reason than no matter how well prepared we are, we never have any idea exactly what the school team will be bringing to the table.

The meeting starts with the usual formalities - introductions that we don't need, perfunctory offering of the Parent's Rights that we already have, signing of the attendance sheet.  Then we get into the meat of the meeting.  It starts with us listing K's strengths and our concerns.  We tend to keep our list of strengths brief and only applicable to the school setting.  This time, when we were done with our list, I asked the team to offer their list of K's strengths.  Their list included primarily non-academic things.  "K has such a great personality!" "K is always happy!" "K is such a love, she never complains." "K is always appreciative when her peers help her and she is kind and considerate to her peers."

Yes!  Those are wonderful things that every parent wants to hear!  We couldn't agree more with every single thing that was said.  However, the problem with those statements is that it tends to give the parents a false sense of security.  You begin to believe that they are seeing the same child that you see.  Even with the best of intentions, it does not prepare you well for what is to come.

Then we list our concerns.  My list is long and detailed.  It must be in order to keep everyone on the team accountable to K and to ensure that we are writing a document that meets her individual needs.  I used to be brief, "Our concerns are speech/language, reading comprehension, writing and math reasoning."  Now, those are merely the headings for my list.  You'd think that if I can come up with a comprehensive, detailed list there could be nothing that the team might bring up that will be a surprise.  I thought that, too.  We'd both be wrong.

When it was time for the teacher to give her report on K's progress, she had absolutely nothing positive to say.  I'm not being dramatic and I'm not exaggerating.  Every single sentence she uttered was like a punch in the gut.  For that, we were completely unprepared.  This is so common and I often wonder how parents who are just beginning this journey handle it.  For me, even after all this time, I am shell-shocked.  Are we talking about the same girl?  Can't you see, Mrs. Classroom Teacher, how much progress she has made?  It is painful to listen to a teacher describe in detail everything negative she can muster up.  That is my child you are talking about.  It is not possible that it could be that bad, even if I am biased.  I know my child and I can see the progress she has made.  I wouldn't do myself any favors or K any service by burying my head in the sand.  I have to see her weaknesses, but I also see her strengths.

It is not only painful, it is infuriating.  I'm listening to the teacher talk and thinking about all the things that she was supposed to be doing to help K this year and knowing, without a doubt, that she hasn't done most of them.  In fact, when questioned, she had to admit that she "didn't see that on the IEP."  It takes a great deal of control not to jump across the table, wring her neck and scream, "That puts you in VIOLATION of her IEP, which is grounds for legal action!"  That, believe it or not, would be the nice, diplomatic response, even if I did yell and crawl across the table.  In my heart of hearts, I want to sit quietly and ask her how she can live with herself, knowing that she is letting down my K.  She is letting down the very child who "is always happy," who "is very appreciative of her peers," and who "always wants to give a hug."  How do you do that, Mrs. Classroom Teacher?  How can you tell me how terrible my child is doing and not even think to apologize for the role you have played in that failure?  How can you look me in the eye with justification for saying nothing positive about all the hard work my girl has been doing in an effort to follow your rules, do what you ask, and make you proud of her?

I'm listening to her, watching her, noticing that she won't make eye contact with me.  I ask what else we  can do to support K at home.  I ask to be more informed so that we can help K and be consistent with what is going on in school.  Could we have a copy of the book she is reading so we can share it with her at home as well as at school?  I am dismissed.  My requests are brushed off by Mrs. Classroom Teacher.  As I continue to listen, I come to an important realization:  she likes K, she thinks K is sweet, but she does not think that K belongs her in her classroom.

Whether or not an argument could made to support the teacher's belief about K is irrelevant at this point.  The fact remains that K is a student in her classroom.  She is a hard working, eager to learn, student with special needs and a legal document to ensure that her needs are met.  Mrs. Classroom Teacher sees her as someone who doesn't belong there - as though K doesn't even have the potential to rise to the level of other students.

We came home; I was exhausted.  I felt completely defeated.  For all of our work, we are still in essentially the same place - fighting for K's right to an education.  The next morning, it was horrible to drop her off at school, knowing she was spending the morning in a room with a teacher that sees her as a burden; wishing she could spend her whole day with the resource specialist and the speech therapist - two people who genuinely care for her, believe in her abilities and have worked tirelessly to help her make diligent progress.  Liking her is not enough; the teacher needs to want her there, believe in her, be willing to teach her.  I'd like to think that the teacher might make a little extra effort for a student like K, but I've given up that hope.  Now, I just want her to follow the damn IEP.  I dropped K off, came home and cried buckets of tears.  That is MY girl and I feel like I just fed her to the lion.

And that is sad, too.  I understand and appreciate the demands placed on teachers in this day and age.  I understand and because of that, I am available and willing to do whatever we need to in order to support K so she can be successful in school.  We want to work collaboratively with the team.  To have to lower our expectations to simply, "just follow the damn IEP," is sad.

I know that no one will love her like we do.  I know that no one will work harder than we do to help K succeed.  If I am completely clueless about her potential, then someone needs to tell me.  If I am wrong in thinking that she will be able to have a future full of choices, then someone needs to tell me.  I don't believe that.  I see her.  I know her.  I can see what she is capable of doing, given the proper support and time.  I'm not stupid.  I know there will be things that will always be a challenge for her, but I also know that in time, she will be able to access strategies to work around those challenges.

Thirty-six hours after the meeting (and a good night's sleep), I am less defeated.  All this has done, in the long run, is make me more determined to do whatever it takes to give K the same thing that every other child deserves: an education.  As wonderful as the school team is, they need to remember that I have not ever and I will not ever back down if something needs to be done to give K her education.  How this is resolved remains to be seen.  I, of course, have started making plans and started researching ideas.  We meet again in 2 weeks.  I will regroup, prepare our ideas and evidence for them, and sit at the table with renewed resolve.  Mrs. Classroom Teacher has said her piece; now it's my turn.

Monday, February 20, 2012

Take a Ride on My Helicopter

helicopter parenting

noun Informal .
a style of child rearing in which an overprotective mother or father discourages a child's independence by being too involved in the child's life: In typical helicopter parenting, a mother or father swoops in at any sign of challenge or discomfort.
1985–90;  so called because such a parent ‘hovers’ like helicopter


You know them, the helicopter parents.  They cushion the falls or, whenever possible, prevent them; they make excuses for their children; they save the day when a child has been irresponsible.  They are also involved - on the PTA, as the team mom/dad, as the coach, certainly as the chauffer.  When I didn't have kids, I thought it would be so easy to set the boundaries, follow through every time, dole out the discipline when necessary, and everything would play out exactly as I imagined.  I certainly never imagined that I would be a helicopter parent.

Then, I actually had kids.

Suddenly, it wasn't so cut and dry. To some degree, I think most parents have some of the characteristics of helicopter parents.  There is such a primal drive to protect your children.  I was unprepared for how the depth and breadth of my love would cause me to reconsider my grand plans.  Seeing your child happy and thriving is a potent vision.  Who wouldn't want to see their children happy and thriving and be willing to go to nearly any lengths to see them like that all the time?

Learning that your child has a personality and temperament all her own can be a turning point from what you thought you would do to what will actually work.  It is hard to balance the protective instinct that drives the helicopter parent to hover against the knowledge that sometimes we learn more and become better people in the school of hard knocks. It is hard when you look at that sweet face and know that you should enforce the rules, but shudder at the thought of making that sweet face frown because of what you say or do.

I can already hear the voices of protest - many from my friends who are teachers - saying that I am letting the helicopter parent off the hook by describing them simply as protective.  The voices of protest are right, because helicopter parents can have some pretty ugly characteristics, too.  If a child gets a bad grade, the helicopter parent may blame the teacher, the school, the curriculum.  If the child is a bully, it is only because he was provoked first.  Assuming, of course, that there is any acknowledgement at all that the child actually did any bullying.  Many helicopter parents believe their children can do no wrong. The list of grievances against a helicopter parent is long and justified.

I struggle with my inner helicopter mom, especially when it comes to K.  I struggle with it with S, too, but for different reasons.  When I hover over S, the behavior stems from my need to keep her close, to be involved, and to experience life with her.  Sometimes she does need me there, depending on the situation.  Sometimes she needs me by her side to help boost her confidence in a new situation.  Part of the choice to be a stay-at-home mom is driven by the desire to be present and active in her daily pursuits in ways that would be more difficult if I was a working mom.  There are times, however, when she doesn't really need me to hover, yet I find myself there, propeller spinning, waiting.

With K, the helicopter mom in me is driven almost entirely by that primal need to protect her. That, and fear.  She is, in my mind, more vulnerable.  Most extra-special kids are so easily influenced by their peers, I feel compelled to be increasingly vigilant in my protection of her.  I fear that she will be hurt in ways that will affect her for life.  I fear that some stupid kid will make bad choices seem exciting and justified and then what will I do?  Fear, and lots of it.

For S, I still fight my helicopter instincts, but have learned a little more easily when I need to step back.  As hard as it is, sometimes she has to fail forward to success.  There are times when we really do learn more from our mistakes and in order for her to do that, I have to let her make those mistakes.  So, once a year, she can forget her gym clothes or her homework or her lunch and I will bail her out.  After that, she's expected to remember or solve the problem herself.  We don't hold her hand for all of her schoolwork; she is supported when she needs extra help, but is the only one truly responsible for her grades.  I know when I need to push her a little bit so that she will learn to take risks, even if it doesn't turn out exactly as she (or I) hoped.  I am dreading the day that we have to really lay down the law and dole out some serious consequences.  It will happen and I'm sure it won't be a pretty sight when it does, but it will be necessary.

For K, fighting my inner helicopter mom is so much harder to do.  I know that she already works harder than anyone else in our house, just to get through her days.  She is so good at it, too!  I don't want things to be any harder for her.  I am learning, though, that as much as she needs my protection, she needs me to step back.  I need to have the faith in her that when she stumbles, she will be able to get back up.  I need to believe in her abilities to weather the storms.  I need to give her the opportunities to make those same mistakes.  In 2nd grade, K forgot her backpack one day.  She absolutely, positively flipped out.  I mean, full on meltdown - crying, begging me to go home and get it "right now," not wanting to go to school at all until her backpack was there.  Part of that came from her reliance on routines, but the other part was simply that this had never happened before.  Why?  Because I haven't given her many chances to make a mistake like that.  I learned a lot that day.  I did, eventually, get her backpack to school, but because I had other things to do, it didn't get there until lunchtime.  What I figured out, though, is that she might not have been so overwhelmed by the situation if she had experienced a few more like that before.  I have to remember that she is so much more capable than I sometimes allow her to be.

Every day, I have to remind myself that I have a clear set of objectives in parenting.  Call it a "mission statement" if you will, but my goal is to raise kind, responsible, respectable, respectful, smart adults who want to be contributing members of the community.  To do that, I have to cut the engine on my inner helicopter.  I have to do some of the hard stuff.  I have to be more patient because sometimes letting them figure some of it out just takes longer.  I have to remember that eliminating all discomfort from their lives leaves them ill-equipped to be the adults that I hope them to be.  It's painful for all of us and it gives me a newfound respect for my own parents.  I didn't like being grounded at that time, but I can see now that it built some resilience in me that has served me well.  My girls need to learn to roll with the punches, as they say, and they can't do that if I serve my own emotional needs by making everything perfect and easy.

That's my grand plan, now.  I guess time will tell if it works out well - for all of us!

Wednesday, February 15, 2012

Why Moms of Extra-Special Kids are Superior

About a year ago, Amy Chua, a Chinese-American mother created quite a stir with her book, Battle Hymn of the Tiger Mother.  You can read an excerpt here, published by the Wall St. Journal.  Indignant Western mothers everywhere wondered how the Tiger Mother could live with herself. Blogs were on fire with many condemnations about the lifelong damage she was causing to the psyche of her children.  My perception of her writing is that Tiger Mothers, in short, demand perfection from their children and will go to any length to ensure that they meet that demand.  Children are the center of the universe and in that universe they are pushed and prodded to garner every possible achievement that can fit on their resumés.

Now, just last week, here comes another book.  Pamela Druckerman, an American living in Paris, writes Bringing up Bebé, touting the French model of parenting wherein children are brought up learning that they are not the center of the universe.  You can also read here an excerpt published by the Wall St. Journal.  This is, apparently, better than any other parenting plan because children learn to entertain themselves, are never picky eaters and rarely have to be disciplined.

That's my very general synopsis of each "parenting model."

All I can do is laugh when I think of these "superior" mothers.  I have to wonder what either of them would do with an extra-special child.

Tiger Mom doesn't seem to have a sense of humor.  How will she handle the child who absolutely cannot get dressed in the morning unless the tags are removed from every stitch of clothing and all the socks are turned inside out because of that pesky, annoying seam?  For that matter, how will she manage to exact the perfection she seeks from the child who has such fine motor difficulties that shoes with laces are out of the question, along with small buttons?  Piano lessons?  Precisely perfect penmanship?  Tiger Mom will need a large, daily cocktail or her head might explode.  Every day for her will be an uphill battle to change the extra-special child without recognizing her extra-special gifts.  Or maybe Tiger Mom will simply "write-off" the extra-special child as not worth the effort since the extra-special child will never fit her perception of perfection.  She will not see the unique potential of that child.  Too bad for Tiger Mom.

American Mom in France is in for a rude awakening, too.  Extra-special kids are often picky-eaters and many require extraordinary amounts of attention.  They have to be the center of the universe.  What would she do when her child, through no fault of their own, simply cannot be left alone because that child might harm himself, let alone what might happen to the home?  Not only can he not be left alone, but he must be supervised constantly.  That ability to entertain themselves?  Many extra-special kids are experts at that - to their own detriment.  What is one of the key characteristics of an autistic child?  The challenge of engaging with other people.  It could easily be perceived as just preferring to be alone or an extraordinary ability to entertain themselves.  Unfortunately, if misunderstood, that same child may miss out on the many interventions that could be of help.  Oh, and the "big eyes" with the stern, no nonsense look?  Just try that on the kid who doesn't make eye contact well in the first place.  Go ahead, Big Mover.  Let me know how the "big eyes" work for you.  You'll be bobbing and weaving with those big eyes just to try and get the attention of an extra-special kid. By then, the stern, no nonsense look is pointless.  American Mom in France will need to stop drinking the large, daily cocktail.  She will have to realize that her own sense of self, her own definition of herself is no longer separate from her child.  It simply can't be.  Too bad for American Mom in France.

So, why do I think moms of extra-special kids are superior?  I don't.  I do think that we've learned something in between those two parenting models.  In fact, most of the moms of extra-special kids that I know are the last people in the world who would consider themselves superior.  Most often, they would be uncomfortable with the idea at all.  We often wonder if we're doing too much or are we doing too little?  That said, here are some of the things that I see as common characteristics of moms with extra-special kids.

1.  A sense of humor.  Maybe not every minute of every day.  A mom may go months or years without seeing some humor in her life, but then, eventually, she will figure it out.  These moms that I know have decided that viewing their lives with a sense of humor takes the edge off of the daily stress and worry that consumes their minds.  Realistically, at some point, you have to realize that if your child wants to wear herr clothes inside out just to avoid the itchy tags, then so be it.  Take a photo and move on.  We can look around and see how absurd it must look to outsiders, the way we jump through hoops to accommodate our extra-special children.  It is absurd, sometimes, and we can laugh at that, too.

2.  Patience.  Maybe not every minute of every day, but the mom of an extra-special kid has learned more patience than she probably gives herself credit for learning.  Moms of extra-special kids learn that you can't sweat the small stuff all the time and chances are good that you are going to have to repeat yourself 8,000 times before the extra-special child will "get it."  Sure, you need to sweat the small stuff sometimes, but they know that in the end, it's better to deal with the big things and let the rest go.  These moms are more patient with other kids too, if for no other reason than the "typical" child probably seems so much easier to manage.  Once you've scaled Mt. Everest, climbing Mt. Shasta seems like a piece of cake.  By extension, these moms are more tolerant, too.  If she sees a child having a meltdown in the supermarket, she is not passing judgement on the parent.  She is sympathizing with the challenge of dealing with a kid in meltdown mode, whether or not it is the result of the child being extra-special.

3.  Know when to pick your battles.  Lots of moms know this to be true, but the extra-special mom has to be on alert all the time.  For example, extra-special kids are notoriously picky eaters.  Maybe it is because they are just being stubborn, maybe it is something else, but either way, picky eating kids are like horses led to water.  You can keep putting out the broccoli, but short of pumping it through an IV while Susie sleeping, you can't force her to eat it.  Pick your battles.  Moms of extra-special kids have learned that letting Johnny eat noodles and butter for three meals every day may not be the healthiest approach, but it may not be worth fighting over.  Fight the big battles - yes, you have to go to school anyway; no, you may not tear the wallpaper from your walls to make confetti.  Would you want to have that same argument about the noodles every single day, indefinitely?  Not me.  I've got more important things to worry about.

4.  Confidence.  Confidence implies that moms of extra-special kids have everything under control.  More often than not, we don't.  I know that no matter how much I think I've done, I always wonder what I've missed.  I have learned - from many other moms like me - that I don't have time to care so much about what anyone else thinks of me.  That builds incredible confidence.  When "the system" is messing with your kid, watch out for Mama Bear protecting her extra-special cub.  You don't get that kind of courage without the confidence to back it up.  I will go to the mat for K every single time if need be.  I will be the squeaky wheel (I prefer to call it "pleasantly persistent").  I will not care how others judge me because I will not stop until I know that K has every chance to reach her full potential.  And yes, others do judge me.  Some think I should feel bad, asking for services for K when education budgets are being stretched so thin.  I don't care.  I know what my child is worth, even if someone else doesn't.

5.  Flexibility.  One thing every mom of an extra-special kid knows is that it is a rare day when things go exactly as you expect them to go.  I am lucky because K is relatively easy.  I know, when she wakes up every day, she will generally be happy and our day will go as planned.  So many parents are challenged with extra-special kids with the alphabet soup of diagnoses (ADD/ADHD, OCD, BP, PDD-NOS, pick an acronym...), and those kids are extremely unpredictable.  Moms of these kids know that the best plan to have is the backup plan.  You have to be ready to roll with the punches - literally and figuratively.

We are not superior, we've just learned to accept and appreciate a different perspective.  If Tiger Mom wants to see a child who works hard every second of the day, she needs to spend time with an extra-special kid.  She might adjust her definition of "success" and "perfection."  If American Mom in France wants to see a child who is able to entertain himself, she needs to spend time with the mom of a non-verbal autistic child who has never told his parents that he loves them.  She might think twice about the importance of children being seen, not heard.

 I know that for all of K's challenges, I am extremely fortunate.  She doesn't have behavior challenges, she doesn't struggle with mental illness, and she isn't a very picky eater.  She is able to play piano and engage in social activities with her peers.  She tells me she loves me every single day.  I know that I am extremely fortunate to have a daughter like S who, while complex in her own way, is so very simple to parent.  I admire and appreciate the moms who have extra-special kids that challenge them in every possible way and still they continue to get up each day and face those challenges.  Who's to say that they are or aren't superior?  They are amazing moms and I'm proud to know so many of them.

Friday, February 10, 2012

Preparing for the IEP

After receiving some positive feedback on my last posting regarding the educational system, I thought I might be able to dig up a few other tips that have been helpful to me.  We will be having an IEP meeting in two weeks, so I find this a good opportunity to make sure I have all of my plans prepared.  I am not an expert, by any means.  I have just been around the block a couple of times.  So, in no particular order:

1.  In Navigating the Educational System, I said to make sure your comments are documented.  Honestly, it is in your best interest to make sure everything is documented.  Warning: you will easily  kill a forest with all of the papers you will have in a giant binder.  I am on my 4th giant binder.  I am probably on the tree-hugger-protectors 10 Most Wanted list. If there has been any mention of K, it's in there.  If you want a meeting, request it in writing.  If you want a progress report, request it in writing. If you just want to check and see if your child has the sniffles at school today, put it in writing and ask for the response in writing. This is for the benefit of everyone on the team.  If it is in writing, the proof will be on the page.  Email really is fine (some sources would disagree), but make sure you keep the emails, back up the emails, print the emails.

2.  How do you document a phone call?  First, it's pretty rare for me to have a conversation by phone regarding K.  Email is most common.  Face to face is great, but not always practical.  To document a phone call, I just keep a simple note for the binder.  Who, what, why, when.  Those are things that need to be documented.  Who did you talk to?  What did you talk about?  Why was this discussed?  When will action be taken and by whom?  You may not always have answers for all of those, depending on the purpose of the phone call, but it's an easy way to remember.

3.  The Binder.  The binder is kind of like the parents' extra-special bible.  Today, all over the country, parents are marching into school meetings and plopping a binder the size and weight of a baby elephant on the table.  Disclaimer:  my binder is not always in perfect order.  I usually sit down once a year to clean it up.  In the binder are the sections that work for me.  Yours might be different, although some are going to be pretty universal.  Section 1 - the IEP.  I keep the most current progress report on top. Behind those is the most current IEP.  Behind that is the previous year's IEP. Why?  It helps to see if progress is being made if you can quickly refer to previous goals and accommodations.  Next section, Parent's Rights. Your school is required by law to offer you a copy at every annual IEP meeting.  If it hasn't changed, no need to kill another tree.  Either way, I have my copy there.  Section 3 is usually my notes or interesting articles and always a copy of the condensed description of K's diagnosis.  That is one section that I can grab from quickly if I need to.  The 4th section is a copy of all of the most recent assessments - those done in school as well as any that have been done privately.

Aside from organization, the binder shows the school team that you are invested in the process and educated about your child and her specific needs.  It adds to your credibility.

4.  The photo.  I know it sounds strange, but always make sure there is a photo of your child on the table.  Meetings can get intense very quickly and it's most important to make sure that everyone, even you, is focused on the child.  I know that there have been times when I have just been so pissed off, I just want to WIN at whatever it is we are discussing.  Those are the times when I have to take a step back, look at the picture and reassess whether or not this is about K.  Granted, most of the time I wouldn't get that angry if I wasn't passionate about something that would help K, but occasionally I forget that sometimes you need to pick your battles.  I usually give each person on the team a picture of K.  I want them to look at her sweet face every time they have to reference her files.

5.  Know that if you give the school team 24-48 hours notice, you can record the meeting.  We have recorded a couple of meetings, just so we had something else to reference later, if we needed it.  So much is discussed at these meetings, the information overload can be overwhelming.

6.  If it is available, if it is remotely possible, hire an advocate to help you with this process.  Depending on where you live, there may be a variety of options to find one.  You do not have to hire an attorney, although many advocates are also attorneys.  An advocate not only knows the law, but will know the little quirks within your district that you would not ever know as a parent who only sits in on meetings for your own child.  

7.  Have a personal partner at the table.  If that is Dad (or Mom, depending on who takes the lead on these things), then great!  If it is grandma, grandpa, aunt, uncle, godparent, or your best friend, great. You will feel better knowing that you are not alone representing your child.  That person is your support system.  Bringing a friend can be especially helpful for taking notes.  It allows you to actively listen and participate in the meeting without trying to take notes at the same time.

I know that a lot parents are uncomfortable with things like recording a meeting, requesting an assessment, asking for a service or accommodation, or bringing an advocate.  I was too, at first.  I don't want to have to fight for every little thing that K needs.  It felt like I was trying to pick a fight if I did any of those things.  So, even though it has pushed me out of my comfort zone, I have learned to ask.  I bring the photo.  I demand answers to my questions and accountability for everyone at the table.  I am "pleasantly persistent," keeping at it until I'm satisfied.  If need be, your advocate can be the bad guy - mine usually is!  It may seem adversarial, but ultimately, we are supposed to be a team working for my child.  It isn't picking a fight; it is working together and exercising all options available to you to make the best decisions possible for your child.

If there was something that I could give to every parent who has ever asked me about these meetings, it would be to give them their own confidence and power.   Always remember to take your own place at the table.  You, as the parent, are the most important person at the table.  You are there for your child and you are her voice in this situation.  You know what they say about the squeaky wheel?  Be the squeaky wheel.  Don't let your own misgivings get in the way of advocating for your child.  Do your research, make your plan, and be a part of the team, not a spectator in the stands.  I didn't always know this.  I'm so glad that I have learned something over the last 8 years.

Then, when the meeting is done, treat yourself to a cocktail (or two) or chocolate (by the pound)  or something that is a real reward for your hard work.  You deserve it!

Saturday, February 4, 2012

Navigating the Educational System

Perhaps one of the most befuddling experiences as the parent of an extra-special kid is how to make sure your child gets a proper education.  From the outside, this may seem like a simple situation.  School down the street; send child to school.  There are lots and lots of parents of extra-special kids who do just that.  For them, that works.  For many of the people I know, however, it isn't that simple.  These kids need all sorts of different accommodations and teaching methods in order to receive an education.

Schools have it tough.  They must provide a free and appropriate education to every child, even as the numbers of children needing special services is on the rise and budget money is on the decline.  The Individuals with Disabilities Education Act (IDEA) allows Congress to contribute up to 40% of the per pupil cost for special education services, yet the actual amount that is paid is 18%, at best, and often less than that.  Schools have to provide the services, no matter what they are, if the services are deemed appropriate for the child.  Budget doesn't matter; in fact, it is illegal for a school to even imply to a parent that a child is not getting a service because the school can't afford it.

Parents want the best for their children.  When I look at K, I can see all that she is capable of and I don't want her to ever feel like her options are limited because of her challenges.  She will be able to do anything she chooses, as long as she gets the proper education now.  It is frustrating to know that, legally, the school is only required to give her enough to pass.  Meeting her full potential is not even a topic of discussion.  It's a crappy position for both sides of the table.  I can only imagine that it must be extremely frustrating for some educators to know what should be done and be limited by what can be done.  Knowing this, though, you will have a better understanding of what the school can do and what they don't have to do.  They don't have to make sure your child functions well at home; they do have make sure your child can function well at school.

I am often asked to share what I know about navigating the school system for an IEP.  I've learned through trial and error.  I'm happy to share what I have learned.  Others have shared with me and we can all pay it forward.   I am not expert by any means, but this is what I have figured out that works for me:

1.  When the school is offering services for your child, whether that be in the form of accommodations in the classroom (i.e. seating in the front of the room, extra time on tests) or direct service (speech therapy, resource specialist), you can safely assume that they are not putting their best offer on the table. They are operating under a "less is more" philosophy.  Consider this merely a starting point for negotiation.

2.  Never, ever, ever, sign the IEP at the meeting.  Even if the document is everything you could have ever wanted for your child served up on a 24kt gold platter and surrounded by See's Candies wrapped in a college scholarship, don't sign it.  We are all human; sitting in a long meeting can take a lot out of you, especially when the discussion is about your child.  Take it home and read it when you aren't so overwhelmed.  Once, our very well-meaning, very pregnant speech therapist wrote a goal that stated, "K has trouble with vowels."  It should have been, "K has trouble with verbs."  Small typo?  Maybe, but the next speech therapist to work with K might have been going down the entirely wrong road had I not caught the mistake when I reread the IEP at home.

3.  Make sure you are prepared and your input is documented.  Create an agenda for yourself.  You should know exactly what you want to have discussed.  List ALL of your concerns.  If you say it at the IEP meeting, it should be documented.  This is another reason not to sign the IEP at the meeting.  Sometimes the notes need to be reviewed and revised if they don't reflect your input.

4.  To the best of your ability, be ready to advocate for your child.  This is really hard.  I'd prefer to just be straight, lay it all out on the table, have everyone agree with me and move on.  ;-)  I tell myself that while I may not be an expert in Special Education or Special Education Law, I have a Ph.D. in my daughter.  Do your research; know as much as you can about your child's diagnosis and from there find out what kinds of methods might work best for her.  Be ready to make suggestions even if they are "out of the box."  Even if you aren't a master negotiator, you build credibility by being prepared.

5.  Don't be afraid to question what you are told and don't be afraid to go the distance.  When K was in preschool, her teacher said to me, "We think K has a sensory integration issue.  She's standing on her head in buckets of blocks." I had K assessed and whoa!  The teacher was right!  Fast forward to the meeting and the teacher remained silent while the occupational therapist said, "No, she doesn't have any trouble.  Any sensory issues she has don't impact her access to her education."  What?  Standing on your head in buckets of blocks isn't a problem?  We kept questioning and pushing until we got something helpful in place for K.  Twice in that process, we had to threaten legal action.  If your gut tells you this is important, then you need to trust that instinct.

6.  Assume that your team wants to do what they can for your child.  This may or may not be true, but assume the best and prepare for the worst. Most of the people in the meeting really don't have decision making power, but they do know that budgets are stretched and their student caseloads are increasing.  Sometimes putting your foot down often enough results in having an actual decision maker at the table. That's a good thing.  I'd rather know what/who I'm up against.

7.  Know your rights.  You have the right to call an IEP meeting at any time, for any reason.  You are entitled to regular progress reports.  You have the right to have things explained to you in language you can understand (those assessments can be akin to reading Greek when you only speak English).  You have the right to ask as many questions as it takes for you to feel confident about the school situation.  I finally figured out that asking if K is making progress isn't enough.  I have to ask, "Is she making the kind of progress you would have expected her to be making at this point in time with the materials/curriculum you are using?"  If the answer is no, I have the right to question what they are going to do about it and in what time frame and what the expected length of time would be to see results to determine if the change has been the right one.  This is supposed to be a team and you, the parents, are on the team, not just spectators in the stands.

8.  Take the Suck-Up Cookies.  Everyone is happier with a tummy full of yummy goodies.

Then, when you are in this process, take a look at your "typical" child and note with extra appreciation how easy things are with her in comparison to all of the above.