Camping? Let me call the hotel...

Of all the adventures I have shared with my girls, Girl Scout camp is one of my favorites.  Let me clarify:  Girl Scout camp with S has been one of my favorites.  The summer between 2nd & 3rd grade, she and I went to a special session at Girl Scout camp designed for the girls to bring an adult camper with them.  This is my kind of camping!  All I had to do was pack our bags and get us there.  From the minute we arrived, everything was planned for us.  We ate when they told us to eat, we rode horses when they told us to ride, we sang songs, made s’mores, paddled canoes - all when they told us to!  I didn’t have to plan a thing.

After 2 consecutive years of this, I couldn’t wait to take K!  She was 7 years old, heading into 2nd grade and I thought she'd really enjoy it.  I roped her Godmother into attending with us, packed the tent and sleeping bags and made the trek to camp.  K was really excited, too!  After all, she’d spent two years watching me take S and any self-respecting little sister will want to be included, too.  It’s in the handbook.  Monkey see, monkey do.

Our arrival at camp was marked by excessively hot temperatures.  Triple-digit temps, 4 days, 1 shower allowed (not per day, just one in total).  Also, there isn’t any ice at camp, so while we had our water bottles, it just isn’t quite the same to try to quench your thirst with lukewarm water.  Not exactly an auspicious beginning.

By the time we were getting ready for bed on that first day - just a few hours after our arrival - I was ready to go home.  I looked at K and realized that in all my excitement, I forgot the Girl Scout motto:  Be prepared.  I forgot that she would be on complete sensory overload and therefore, at the edge of total meltdown at all times.  She’s never been one to give in to tantrums, but once she’s overstimulated, she has a hard time sleeping and will easily tune out everything around her which can boil down to a safety issue at places like camp.  Sure enough, we lost her for a while on the 2nd day.  She wouldn’t participate in her dancing class and then when it was over, cried buckets of tears because it was over and she didn’t get to dance.  She barely ate - the food was foreign to her.  She loved riding the horse, though, and enjoyed swimming in the “refreshing” swimming hole (refreshing = frigid cold water since it is nothing more than snow melt, but with triple digit heat, it was actually refreshing).  Her Godmother handled most of this as I spent my time with S.  God bless her Godmother.

At the end of our 2nd day, we got to take our shower.  Hooray!  Except that the hot water wasn’t working and the water was ICY cold.  In an example of my stellar parenting skills, I strip the girls naked and shove S in the shower, helping her wash quickly before she turns into a popsicle.  K, in all of her naked glory, says, “I need to go potty.”  Fine.  I take her to the potty where she sits down, starts to go and....

a frog jumps out of the toilet from between her legs.

I am not kidding.  Yes, you may laugh.  It was pretty funny, but not to K.  Rightfully so, she flipped out!

For the next 24 hours, she kept asking me if there was a frog in her tummy.  I could not figure out why she kept asking me that and I kept assuring her that there was not a frog in her tummy.  Then, it occurred to me.  This is my very literal, language challenged, sensory overloaded, child.  She thinks she peed out that frog!

Needless to say, she’s not a big fan of frogs.  And we still had 2 days of camp left...

Fast forward to the present, a few weeks ago we are enjoying our pool and all of a sudden, K screams, “THERE’S A FROG IN THE POOL!!!!”  There were quite a few leaves in the pool and we assured her she was just seeing a shadow from a leaf.  This went on for at least 2 hours, until, finally, sure enough, we found the frog in the pool.  Oh, she was vindicated!  She was right and I’m sure she won’t let us forget it for a very long time.  Of course, this has been followed with the need to do a thorough frog search each time she wants to get in the pool.  

The irony?  She adores Kermit the Frog. 

We’ve not been back to Girl Scout camp. My camping days are over.  I can make s’mores at home - in the microwave if I am desperate.  I can sing camp songs by the pool.  K’s Godmother still speaks to me, so I guess we all survived.  Believe it or not, K would be the first to tell you how much fun she had at Girl Scout camp and wonders when we can go back.

Never, my frog-fearing girl.  Never.  We’ll save our adventures for places with hotel rooms and professionally maintained bathrooms that keep the critters out.

We have survived...

We finally reached the end of our school year.  Finally.  I'm pretty sure this one was measured in dog years.  I am so glad it is behind us.

I have been away from my blog for 6 weeks.  This is no way to build a readership, I know, but life is a journey and my journey has been bumpy lately.  Starting this blog meant sharing my thoughts and being vulnerable.  It means letting people know the good, the bad, and everything in between.  Appearances would dictate that I don't share the hard stuff, but to censure the blog in that way would contradict the spirit in which I started it.  Realistically, though, it's not always easy to be true to that spirit.  Some things are just personally harder to express and take time to process.

I spent the better part of May doing research.  More research.  The never-ending pile of research.  Why?  Because we had yet another IEP meeting to tackle near the end of May.  This was our 5th meeting of the year.  I think that is a record.  I wonder if I should call the Guinness Book of World Records?  I may have made history this year in terms of IEP meetings.

I'd like to say that this meeting was particularly important but the truth is that every meeting has been equally important.  They are also equally stressful.  This one, though, seemed more monumental because the discussion was to focus on K's school placement for 5th grade.

Armed with my delicious To-Die-For Blueberry Muffins (aka Suck-Up Muffins), we dragged ourselves to a 7:45 a.m. meeting.  My husband and I had spent a great deal of time discussing our different options, what we wanted to accomplish and our strategy.  This time, I was going to be the Good Cop and he was going to be the Bad Cop.  Have I mentioned how much this ridiculous game play irritates me? Still, we've learned to play the game.  Blech.

As expected, our options were reduced to two:  keep her where she is, with the same supports in place and where she continues to fail and make little to no progress or move her to a special education class at a different school.  Both options left us with a sick feeling in our stomachs.  The school team strongly recommended the special education placement.  I could speculate as to the different reasons why each person on the team felt that way, but it would be discouraging to do so.  Although I try to leave emotion out of it, this is always an emotional situation.  I was struck by how easy it was for them to let her go.  Again, I thought about how much love she has shown them, day after day, year after year and even if they believe it to be in her best interest, isn't it hard for anyone to say goodbye to her?  And what about her social and emotional well-being?  She has only ever known this school, these other children.  Moving her means changing everything - school, teacher, speech therapist, students.

Oh and the irony?  The same specialist from the school district was there.  You might recall from an earlier blog entry that he mentioned how the final decision on placement belonged with the district.  I found that funny because there's no way anyone but my husband and I will have that final decision.  At this meeting, he simply stated that these were the offers on the table and it would be a decision for my husband and I to make. I think he's finally getting to know me! So glad he figured that out!  LOL!

We left the meeting without choosing either option.  We needed to think.  I needed to process this monumental change.

In the meantime, while we thought about it, another challenge got in the way.  For some reason, the week after our meeting, K started experiencing significant anxiety.  She missed most of the school week and the pediatrician wants her to see a child psychiatrist for assessment and possible diagnosis of generalized anxiety disorder.  I'm not sure I can accurately describe what it was like to see her in this state.  She was not herself at all.  She was a wreck and it broke our hearts.  Her anxiety was based on an irrational fear and nothing we could do or say seemed to help at all.  We just had to be there for her and hope she could get through it.  Even now, I get teary-eyed thinking of her in that way.  Our happy, smiling, loving girl was replaced with a scared, shell of a girl without a smile or laughter or her normal buoyant personality.

Now our decision became exponentially more complicated.  Would she be more stressed staying where she is, but continuing to fail or moving to a new school with no guarantee of success?  I think I got another clump of gray hair and 15 more wrinkles that week.

For now, we've decided to accept the offer to move her to a new class at a new school.  We are also considering homeschooling.  The speech therapist that has been working with her at school since 1st grade is moving to the same new school, which made that offer significantly more appealing.  We shall see where this leads us.

Still, even in these difficult times, I look at her and realize how much more she brings to my life than I could have ever anticipated.  I am so much better as a person for having this particular child in my life.  When I think about how much I used to take for granted, I am grateful that my eyes have been opened.

What to do, what to do...

It all started with Gymboree.  If you've never heard of Gymboree, picture a room filled with brightly colored play structures (toddler sized), brightly colored balls, brightly colored walls, and brightly colored parachutes.  In this room, you will see parents and their children, primarily babies and toddlers.  In my case, it all began with S when she was 7 months old.  At that age, the reality was that she was never going to be doing back flips before she could walk, but there was one important component that was a potent elixir...other grown ups!  This is a huge draw for most parents.  When the kid's activities are also social time for the grown ups, it's a win-win!

From Gymboree came gymnastics, play & music classes, dance classes, day camps, swimming lessons, Girl Scouts, and piano lessons.  We aren't alone!  In households throughout our community, parents are busy encouraging exploration, skill development, and packing schedules of activities that require spreadsheets and color coded calendars to get through the day.

I've pretty much given S & K the chance to explore.  I may have made the initial choices to see what they like or where their natural aptitudes lie.  For S, she really enjoys dance and is beginning to find her niche in jazz dance, although she likes ballet, too.  She likes Girl Scouts and is often up for trying new things.  She is a talented artist and if I offer art classes, she will be happy to go.  As always, things with K are slightly more complicated.

K has tried a variety of activities.  We used to say that K would be happiest playing softball, while singing or playing an instrument, wearing a tutu.  She wants to do it all.  We want her to do it all, but I have learned that some things just aren't meant for her, no matter how much she wants it.

With her auditory processing disorder, she doesn't always hear what is around her as fast as it is delivered.  She simply won't hear instructions, especially if they are given too quickly, and particularly when there are competing sounds jumbling up the process.  This makes team sports very stressful, so we took softball and soccer off the list of activities.  Golf?  Possibly.  Tennis?  Maybe.

She seems to have an aptitude for music.  From a young age, she could sing on key and keep a beat.  So, when she wanted to dance like her big sister, it seemed like it would be a great fit.  It was...until she wanted to try tap dancing!  Tap dancing?  My child who can't stand loud noise, plugs her ears with her fingers, and will avoid shopping in stores with loud music?  She loved tapping, but when her teacher started telling her she had to practice at home, I knew something was up.  Yeah, tapping really wasn't up her alley.  Kind of like swimming, she was having a tough time getting her feet to do something different from her arms.  Frankly, she looked like a marionette with someone else pulling the strings, arms and legs going different directions, floppy and loose...and I say that with all the love in the world.  Thankfully, piano lessons have been wonderful.  It's individual, only as loud as she plays, and suits her innate musical talents.

Girl Scouts has been an easy and constant activity for both girls.  That is changing now, too.  K is just not as mature as her peers and it is difficult for her to stay engaged in our activities when things are often just above her head, a little bit out of reach.

So, what to do?  What to do?  I asked some other parents with special needs kids what kinds of things their kids participate in.  You know what they said?  Most of them said karate or martial arts.  Okkaayy.  Do they play music in those classes?  Can she wear a tutu?  No?  Well, we might give it a try anyway.  I have a hard time picturing her with the discipline required in those classes. I have a hard time picturing her karate chopping her way through the world.  On the other hand, we don't want her to be limited, so I can't cross it off the list until she's tried it.

Summer is coming soon and that is a great time to try new things, so we shall see what that brings.  Maybe I can find her a pink karate outfit...

42 days and counting...

I used to love school.  As a child, I was an avid reader and loved school.  As a teen, I was much more interested in social activities, but still, I loved school and worked hard to do my best.  I have always wanted my children to have a love of learning and for the most part, they do.

Now?  I'm not so fond of school.  It seems as though the extraordinary effort I have made to see that K gets a proper education has had a significant impact on my feelings about school.  Negative impact.  No longer am I the one excited for the kids to go back to school.  I am the one wishing vacation lasted a little bit longer.  I am the one with the countdown on my calendar, marking off day by day until school is out for summer.

On the list of "things I need to do better," is accepting that this will not change and therefore, I should not let it get to me.

We were on vacation last week.  I love vacation!  Everyone loves vacations, I know.  However, I think a lot of stay-at-home parents are excited when the kids go back to school after a break.  Sometimes, too much togetherness just gets to be, well, too much.  I get that, too.  I am guessing that I am in the minority.  I don't like it when my kids have to go back to school.  Why?  Because I know that we have to go back to all that comes with it.

For S, she will have homework and projects, as usual.  With her, I get tired of the drudgery of the routine.  Sometimes, I just want to take a day off with her.  Or take her to breakfast and show up to school when we are ready.  Instead, I got a truancy letter from the school a couple of weeks ago.  It seems that S has missed 12 days of school in the 2nd trimester.  90% attendance is required, so she can go to Saturday School to make up her absences.  Except that all of her absences are excused and half of them are the result of her injury last Fall.  Needless to say, a call to the Vice Principal assured us that they are simply required by law to send those out and they know that S is doing fine and her absences were excused, but as long as she doesn't miss any more school this year, she will be at the required 90% attendance.  Great.  Child of mine, you better not get sick and we'll just have to forget about taking that Friday off to go away for a weekend, even though your grades are excellent and missing a day isn't going to change any of that. *sigh*

With K, in particular, it is like a big, black cloud comes to hang over my head.  I know we are going back to day after day of homework, academic challenges, and for me, worry, worry, worry.  As I've expressed before, this year has been particularly difficult, especially when it became clear that the teacher isn't fully committed to K's success.  I live for Friday, when I know we won't have any homework.  On the other hand, I get frustrated when K is not given the long term projects that other kids do.  I'd take some of that extra work because I know how enriching those bigger projects are and because I believe in her ability to learn.  I know it seems like I am contradicting myself.  I am just trying to see that K gets the same opportunities as other children.  I have expressed my commitment to helping her outside of school so that she can have those same opportunities.  The point of her IEP is not to eliminate assignments, it is to modify them when necessary.

See?  I quickly get sucked into the multi-facted, complicated situation we call "school."

It isn't going to change.  Not really.  So I need to change.  I need to accept that this is what school is for now.  Accept the cards I've been dealt for this year and hope that the next deal results in a better hand.

Fine.  I'll suck it up.  Why?  Because there are only 42 school days left until Summer!  I wasn't kidding about that calendar countdown...

Round Hole, Square Peg, Squiggly Lines

Do you remember that feeling from middle school when you just weren't sure where you fit?  Or was that just me?  I've experienced that same feeling many times over the course of the years, but never more so than I have as a parent.

In the past, I've been very open about the fact that it took us a long time and a lot of doctors to have our babies.  Infertility is a wild, crazy, emotional roller coaster and for all the people that watched me go on that ride, can I just blame it on the hormones?  I was crazy, irrational, and more than anything, just felt like I didn't fit in.  Fortunately for me, I found a wonderful support system that made the journey easier and even better, I have two children to show for it.  Still, it felt strange being so different from everyone else.

S arrived 5 weeks early by emergency c-section.  No, I was not prepared for that.  In fact, I wasn't prepared for much.  I was smugly thinking that I would have my baby sometime around my due date and that I still had plenty of time, just like every other person I know.  Whoops!  S needed serious care and was transported across town to the Neonatal Intensive Care Unit.  She was there for 18 days.  It was an odd feeling.  We would go there every day, more than once, to be with her.  Here was our 35 week baby next to a bunch of 26, 27, 28 week babies.  She didn't really look like a preemie, especially after she was untethered from IVs and the ventilator.  Still, we were a family experiencing life with a sick newborn, just like everyone else.  We were going home every day to an empty crib, an empty rocking chair, our empty arms.   Except it felt different.  It was almost like she wasn't "sick enough" to make us one of the crowd. We were invited to the NICU reunion later the following year and when we went, it felt very much like we didn't belong. No one knew us, not even the nurses or doctors.  Our 18 days felt insignificant in that crowd, although for us, it was monumental.  It was so strange because we really did experience many of the same things that every other family attending had experienced, but it wasn't "enough."  We never went back.

With K, we have had many conversations over the years with each other and professionals about how she just doesn't fit in any "box."  When she was in preschool, there was much discussion about whether or not she was autistic.  Our journey to proper diagnoses has been more like a process of elimination.  She's not autistic, she's not dyslexic, she's not ADHD, she's not apraxic, she doesn't have an articulation problem.  This goes on and on.  It is a constant challenge for us and for the school because there's no way to make a good prediction of her anticipated progress.  Often, kids with a clear diagnosis - autism, dyslexia, sensory processing disorder, apraxia, speech articulation - are helped by a fairly consistent toolbox.  Reach in, pull something out and it will likely be beneficial to the child. Certainly, every child is unique and may need a unique set of tools, but with a clear diagnosis, there is at least a place to start.  K doesn't fit the profiles very well.  She is, in her own extra-special way, a square peg trying to fit in the round hole.  To help her often means that the best we can do is just keep throwing things her way, hoping something will stick.

As K's parent, I find myself trying to follow these strange squiggly lines.  I want - need - to connect with other parents experiencing what I experience.  When I think I have found something, I often look around and notice that while K most certainly is extra-special, we don't have nearly the same kinds of challenges that so many other families with extra-special kids are facing.  She's not quite "impaired enough" compared to so many others.  I still need the support, but just as I did in the NICU with S, I'm not sure I belong with these other parents who are struggling with so much more than I am. I am the one they will look at and think, "What are you complaining about?  Try having an kid who is (fill in the blank with multiple diagnoses)!"  I don't diminish their frustration; I believe it must be grueling to try and successfully parent a child with that many issues.  On the other hand, I'm facing the same emotions, the same fears, the same frustrations, but I just don't quite fit in.  I find myself being quiet about K's actual diagnosis.  If letting someone think that my situation is more similar to theirs provides both of us the support we need, then so be it.

I am very grateful that my situation has never been "enough."  I appreciate and have so much sympathy for the more severe situations many parents face.  I am happy with my round hole, square peg, squiggly line life.  I wouldn't want it any other way.

A Happy Place

For me, one of the most difficult daily challenges of having any children, but especially an extra-special child is that I worry.  I worry all. the. time.  I may not be sitting around wallowing in it all day long, but it is there.  It's in the back of my mind at all times.  I participated in a rather spirited discussion online recently where the challenge put forth was, essentially, "Why do you think your kids have any more challenges than any other kid?  What makes you think that you are so special?"  Those weren't the exact questions, but the point was clear - parents of special needs kids are whiny and entitled and judgmental.  I actually did give my response some thought beyond my initial "walk a mile in my moccasins" knee-jerk reaction.  What do I think makes my situation different?

I am not naive.  I have a really great life with a really great family.  I do not think that my challenges are equal to the truly difficult situations that many families face.  I have a roof over my head, clothes on my back, food on my table, a car in the garage and I don't ever have to worry about any of that being there each and every day.  I am grateful for my life every single day.  It is abundant in the most important ways and in many less important, but still very notable, ways.

However, the difference, I think, for me comes down to worry.  I worry about S, just like any mother would.  I worry that some dumb boy will break her heart (inevitable); I worry that she's going to make some horrible mistakes as she grows (likely - didn't we all?); I worry that her injury last Fall will have a lifelong impact on her (time will tell).  What I don't worry about is her general future.  I know she will graduate from high school, go to college, get a job, contribute to her community, find love.  I may not know the exact details, but I can clearly see her future.

With K, I don't have that same luxury.  I worry all the time about her future.  I worry that she will never catch up to her peers in academics.  I worry that her self-esteem will take a beating because she struggles in school in ways her peers never will.  I worry that by the time she graduates from high school, she will be so burnt out by school that she won't go to college.  I worry that even with her big heart, no one will take the time to see her and love her the way she deserves to be loved.   I worry that I don't have the foggiest notion what her future will look like.

I need a break from the worry.  Who doesn't?  I worry too much and though I hate to admit it, I need to take a break.  I need to find my happy place.  For a long time, that place was church.  For a couple of hours, once a week, we were just a normal family.  I didn't have to worry what people thought of K or how she came across to them.  Everyone there just loved her...and us...just as we are.  When that started to change, when she was standing alongside the few other girls that were at church, I could no longer leave her differences at the door.  My two hours a week of "I don't have to worry about her" time vanished.  So, we changed churches.  That wasn't the only reason, but it was one reason.  It was a good change for us and once again, I could just enjoy my two hours on Sunday free from the worry.  We were just "us" again.

Until last weekend.  S & K went to training to serve as acolytes at church.  They have done this at our previous church and really enjoy serving at the altar.  K, especially, has been looking forward to this.  Then, our marvelous priest - whom we really adore - set forth his expectations:  you must sit still, you must not play with your acolyte robes, you must not look bored during the sermon.  And just like that, POOF!  I was right back to having to worry again.

I still have not decided exactly how I will handle it.  Helicopter Mom in me says to call the priest, explain K's situation, ask for his patience, beg him not to "fire" her because it means so much to her.  Rational Mom says to wait.  See how she does.  She often rises to the occasion when I least expect it.  Either way, though, I've now got worry sitting there in the back of my head during those two sacred hours on Sunday.

And, in my typical overanalyzing way, I thought about this until it finally struck me that sometimes, in my own worry, I forget that I should have faith in K.  Faith at church is particularly appropriate, don't you think?   I short-change her by assuming things will go poorly instead of believing in her ability.

Once again, I realize that my extra-special child has enriched my life in more ways than I know.  Worry keeps me in a negative place; faith puts me in a positive one.  She reminds me how very important faith is and with that, I will always have my happy place.

You Don't Know Me Very Well

It was a week ago that we had our second meeting with the school team to discuss K's IEP.  The good news is that this one was far less painful than the previous one.  The teacher had very little to say...well, maybe because it was my turn.

That sounds pretty assertive of me, doesn't it?  Shut up, Mrs. Negative Classroom Teacher.  It's my turn.  The fact is, I'm not particularly assertive.  I am determined.  I am tenacious.  I will work through an issue until I've beaten the proverbial dead horse into a puddle.  I am excellent at being the squeaky wheel (pleasantly persistent, thank you very much).  But I'm not particularly assertive.  There are times, though, when I can be manipulative...no, let's call it "strategic."

In the two weeks between meetings, I had plenty of time to do more research, gather more ideas, formulate more questions, and write a whole new list of things to cover.

*side note*  It is typically recommended to dig into a meeting until it is all hammered out, no matter how long it takes.  I've decided that splitting up the meeting actually works much better for me.  Not only do I get the extra time to absorb all the overwhelming information from the first meeting, but I get plenty of time to prepare for the second.  Granted, it gives the school/district team time to do the same, but I'm okay with that.  I think the whole idea of sitting there for hours is as much a strategy for a parent as it is for the school/district team.  There has to be some strategy to just plain wear a parent out and a long meeting can do just that.  Also, I'm less emotional when I'm not so overwhelmed and it's very helpful to leave emotion out of these meetings whenever possible.

Husband and I talked about what we wanted to accomplish and decided that there was one especially important concern that we wanted documented:  K is now about 2 years behind in reading.  That affects every other subject taught in school.  In the past year, she has not made much progress at all.  The gap is getting wider, not narrower, between her and her peers.  How do you (meaning the school team) plan to close the gap?  This was strategy on our part.

Originally, I just wanted the concern documented.  We were actually at this meeting to discuss the accommodations and services.  Boy, did this concern take the meeting in a totally different direction.  It was fine, but just not what we had planned.  Is any of this process EVER what we plan?  It was our intention, though, to plant the seed that we know what is expected - K to be at grade level - and to put everyone on notice that we won't stop until that day...and probably not even then.  We want a plan; we expect a plan; K deserves a plan.

We have been working with a school team since K was 3 years old.  The team we have now is not the team we had then.  This team has been with us for 2 years now, which is long enough to know me pretty well, I think.  Certain members of the team have been with us longer, so they should know me very well.  It came as a surprise to me when our school district program specialist (aka Budget Barrier) said,

"Ultimately, it is the school district that makes the final decision on placement for FAPE, but that doesn't mean that your input isn't important.  You are a very important part of the team."

HAHAHAHAHAHAHAHAHAHA!!!

Dude, you don't know me very well.  Hello?  Tenacious. Determined. Smart. Educated. Well-informed. Ph.D. in K.  Do you really think, for even one millisecond, that I will allow anyone other than my husband and I to make the final decisions for K?  Seriously?  Have I ever just blindly accepted anything on the table without at least questioning it, let alone reserving (or using) my veto power?  Clearly, I'm not following the school district rules.

I may not like the barriers that are put in front of me, but I would not be doing my job - I wouldn't be me - if I just looked at those barriers and accepted them.  No, I will look for every way around, over, under, through that barrier.  I may not always get my way, but it won't be because I didn't try.  Mr. School District, I will promise you this:  you are an important part of the team and I know you have a job to do; your input and recommendations are valuable and we will keep an open mind; but in the end,  decisions will either be mutually agreed upon or they will be mine (and my husband's) alone.  Maybe those aren't the "legal" rules, but that's how I roll and it's never been any different.

I think that perhaps I am just as ridiculous as they are sometimes.  I continue to be surprised, even when I really do know better and they continue not to know me very well, or perhaps they just forget what I am like.  Whatever the case, I'm going to get a lot of mileage out of his misguided assumption about me.  Every time I think about it, I giggle.  Thanks for the laugh, Mr. School District.  I have renewed energy.  Statements like that just fuel me.  I'm far from beaten down.  Bring it!

Some of my favorites

If I sat back to think about how many hours I have logged doing research about my extra-special girl and her challenges, I might think I had been to another 4 years of college.  Except, in this case, there is no degree to be achieved.  How many zeroes would be at the end of that log of hours?  Too many.  I call Pintrest the black hole of pretty pictures - one thing leads to another that leads to another that leads to another.  My research has been a lot like that, too.  I start at one source which will lead me to another, etc. It seems to never end.  Yet, along the way, I have found a few gems that I return to time and again.


I've mentioned this many times - navigating the complex maze of the educational system for your extra-special child is, at best, confusing and at worst, completely defeating.  I'm not an attorney, nor do I want to be one, but a general knowledge of special education law has been really helpful.  That's where the people at Wrightslaw come in.  This book has been a huge help to me:

Written explicitly for parents, it is a great guide to all those pesky laws that seem more confusing than deciphering texting abbreviations from your teen.


They have also written another invaluable guide:

The most important thing I learned from this book from the first time I opened the page was to create and keep a paper trail.  If that was all it taught you, it would be worth it, but it covers so much more and definitely keeping my emotions in check when working with the school has been much more beneficial to my daughter.  It is easy to dismiss an emotional parent as, well, just emotional.  It is much harder to dismiss a parent who is prepared and professional.


I continue to look for books that will guide me in helping S, my older garden-variety special, girl to navigate her own emotions as the one who has the extra-special sibling.  I recently purchased this book for her:

The Sibling Slam Book: What It's Really Like to Have a Brother or Sister with Special Needs

Written in a series of questions answered by teens ranging in age from 12-19, this book shares that, if nothing else, all of the emotions that S has felt/is feeling/will feel are normal and understandable.  She is not alone and I think that might be the best thing she gets from this book.  Most of the siblings have more severe challenges than K, so it's not 100% relatable to S, but that, too, helps to keep some perspective on her own situation.


I am still looking for some good guidance on how to fully explain to S, in ways that she can understand completely, what the specific challenges are for K.  I think S will benefit from having a more "clinical" explanation than just "her brain is different from your brain."  I think I can do better than that, but I'm really hoping I can find someone who has walked that walk and might have some good ideas.


My favorite book for me - the one that reminds me that my emotions are normal and understandable is this one:

Shut Up About Your Perfect Kid!

I recently wrote this review on Amazon and for the sake of my sanity and lack of general creativity, I figured I would just copy it here rather than try to come up with something new.  


I don't remember who recommended this book to me, but I wish I did so I could thank them properly. In a world where we are all measured by our stats: grades, SAT scores, university diplomas, job, salary, etc., Gina Gallagher and Patricia Konjoian remind us that perfection is highly overrated. As I read their book, I felt like I had found kindred spirits. My own daughter does not have the same challenges as theirs, but my journey as a mom has been remarkably similar. Sometimes, it can feel as if you are on the journey alone, but the Shut Up Sisters remind you that you are not.

The book really recounts their own experiences raising kids with special needs, but along the way, nuggets of professional insight are provided. You will definitely cry while reading this book, but you'll also laugh out loud and be racing to share the excerpts with friends. You will finish the book feeling hopeful and more appreciative of all the imperfections around you - including your own. This may be the best part of the book - being reminded that imperfection really is just perfect.

Don't be deceived by the title! Although the title might imply that the Shut Up Sisters would like to tell off the parents of every child who is seemingly "perfect," nothing could be farther from the point. It's really about embracing all the wonderful qualities of your imperfect child and educating others so that you and your child will not have to live on the fringes of the "perfect" kids.

Many thanks and kudos to the Shut Up Sisters for opening their lives and the lives of their children to help other parents of special needs children feel comfortable, too. These are girls you would want to hang out with - not just Gina & Patty, but their daughters, too.


I promise to gather up a list of my favorite websites.  I wanted to start with books, in part because I was honored to be a guest blogger at www.shutupabout.com this week.  I am genuinely grateful to the Shut Up Sisters for their humor, their wit, and their humility and for allowing my voice to be heard on their website and blog.

Laughter is the Best Medicine

A few weeks ago, my day went like this:  Take K to school at 8:35 a.m.; come back home, eat breakfast; while eating breakfast, I realize that K forgot her FM system (very important for her to have in class) and it is in the backseat of my car;  drive back to K's school to drop off system and drive back home.  That made two trips to K's school in the space of an hour.  I had two things on my agenda that day:  Make an appointment to get my hair done and make an appointment for S to see the orthopedic surgeon for a check up.  I know, already you are wondering how I got off so easy to only have 2 things on my "to do" list.  I didn't.  I've just learned to set my expectations really low, since things never seem to go as expected.  This is the life of a mom, not just a mom to an extra-special kid.  Call the salon; can't get an appointment until 4 weeks past the time I want it.  Hmmmm.... two things that have not gone smoothly.  I should see the warning in that.  Call the orthopedic surgeon's office, expecting that it will be a month or so before we get an appointment.  I was wrong!  They can see her that very day!  This requires some juggling, so I email K's teacher to let her know I will have to pick her up early; I call S's school to let them know I will have to pick her up early.  I call the piano teacher to cancel K's lesson that day.  I start packing the doctor's office survival kit because last time we had an appointment like that at the orthopedic surgeon's office, he was running 2 hours behind.  Okay, all bases covered!  Not more than 45 minutes later, my phone rings.  It is S, calling from school, not feeling well.  Could I please come pick her up?  Of course I can.  Dammit.  Now I've got a sick kid AND I have to go back and rearrange our entire schedule AGAIN!  I email K's teacher...again.  I call the piano teacher...again.  I call the orthopedic surgeon...again. I felt like a boomerang - right back where I started.  I could have been frustrated, but instead, I saw this as funny.  Seriously, could it have been any crazier? Once upon a time, before I had an extra-special kid - heck, before I had any kids at all - a day like that would have turned me upside down and completely derailed me.  Now?  I've learned that sometimes you just have to roll with the punches.  I'm learning to see humor in the mundane things we see every day.

S is at that age where she is just plain silly a lot of the time.  She will find something that amuses her and before she knows it, she's rolling on the floor in full belly-laughing mode.  We were recently listening to an old CD of Disney music.  It has a whole bunch of songs on it from movies S & K have never heard of or seen.  There is one song, "The Spectrum Song," from Walt Disney's Wide World of Color (1961).  Ludwig Von Drake (voiced by Paul Frees) sings about the colors of the spectrum and toward the end, is befuddled over all the colors - including black, and green, and white and stripes and plaid.  For some reason, this absolutely sends S into fits of giggles.  I know it's silly, but that silly?  Not sure.  However, her laughter is, indeed, contagious.  It is so funny to watch her laughing over something silly that it gets the rest of us going as well.

K has always been able to make us laugh.  It is often over things that she says or does that she never intended to be funny, but because it came from her, it made us laugh.  She will come up with things that seem so out of character for her.  The other day, she came marching into the office, cup in hand, and declared, "I just went to get myself a refreshment."  Refreshment?  Who says "refreshment?"  What 10 year old anywhere says, "refreshment," let alone a speech/language impaired kid?  When the song from The Muppet Movie won an Oscar, K enthusiastically hollered, "Oh yeah!  Now that's what I'm talkin' about!  Woo Hoo!"  Seriously, where does she get this stuff?

It's a simple gift: laughter.  I find that as an adult, the opportunities for that uninhibited laughter don't come along as often.  Maybe I've just lost my some of my sense of humor.  Maybe adults have so many responsibilities to manage that we forget to see the humor in the mundane parts of life.  Having an extra-special kid helps with that.  I mean, at some point, you have to look around all the things you are juggling, all the emotional burdens you are carrying and just realize that you can't let it get to you.  Watching the things that crack my girls up reminds me that sometimes, just because we are adults, we take life far too seriously.  When was the last time my girlfriends and I managed to just be together long enough to find something ridiculously funny that makes us dissolve into tear-inducing laughter?

One of my goals from now on is to make a conscious effort to share that laughter with my girls every day.  When the challenges in life get to me, as they did after our IEP meeting last week, I will remember that these two marvelous girls find the fun in their days in ways that I have forgotten.  May we all be blessed with more belly laughs in our days!

P.S.  In the time since I began this post a couple of days ago until now, when I am about ready to publish this post, I have found that this topic is more relevant than I thought.  First, while K was in speech therapy on Wednesday, I was chatting with another parent (who is actually the grandma to another child at speech) and she made a comment about how she hasn't really laughed - really, really laughed - since her husband died 8 years ago.  She finds things funny, but nothing that gets her really going.  It seems that maybe more people than me are losing that carefree experience of the world where we find the true laughter in life around us.

The second thing that happened was that I attended my book club meeting.  We were discussing a book set during WWII; main characters were Jewish.  Although the subject matter in the book wasn't particularly funny, our discussion was spirited and punctuated by moments of spontaneous laughter.  So, to my book club girls, I thank you for giving me an evening of much needed, grown-up girl time and the gift of some really good humor that kept me smiling the rest of the night.  You girls are some super fun people and I'm glad to know you!

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.

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.

Origin: 
1985–90;  so called because such a parent ‘hovers’ like a helicopter

*source:  Dictionary.com

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!

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.

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!